New here, too, need lots of help

[Monica2000]

Hi everyone,

I've been struggling with bad symptoms for nearly a year. Now I have no doubt that POTS is causing them, although I've had ups and down, and periods when it hasn't been so bad. The last few weeks have been brutal, with palps, tachycardia in the morning and rollercoasters all day. (Are these ups and downs over the months usual?)

I believe it all started with a very bad virus/bronchitis last April. I can't prove it, but I had no obvious symptoms before that. Last September a tilt table test was positive, but then for a few months I was better, not sure why. Now it's bad again, and I can't find a doctor who knows a thing about this. Also, I'm extremely sensitive to medication and have low blood pressure, so I'm afraid no meds will help me.

A few questions:

-- Are there any proven exercises I can do to help keep blood from pooling to my legs?

-- Any suggestions for flights? I will need to go on one or two very long flights in the near future and wonder what precautions to take to minimize the chance of bad episodes?

-- Is this condition ever reversible, or will I live and die with it?

-- Do contraceptives help? I was taking some for a while and I suspect it may have helped, but I'm not sure.

And of course I'd really appreciate ANY suggestions on how to manage my symptoms. All this is happening at a time when I'm in the process of adopting a child. I know you all must be horrified that I'm going ahead in spite of my problems, but I'm determined to find a way to live a normal life.

Many thanks,

Monica

[Merrill]

Hi, Monica. Welcome here; you've come to the right place. I encourage you to use the search function to find information and tips--and to keep posting your questions.

I don't think you're crazy at all; I have POTS, and I too am adopting a child.

Compression hose, salt, and water--and plenty of the last two ... (one pair a day will do for the hose ) will become your best friends. These are non pharmaceutical interventions most of us do...

Gotta run for now... Keep reading! (especially the information posted on the potsplace home page; also check out the links posted at the top of the discussion home page)

merrill

[Gena]

Welcome Monica...

Please read the "pinned" links posted at the top of the general discussion page especially the one that says...

"Pinned: Help Yourself to Answers to Common Questions

Links to many sources of information"

You will find a lot of answers to your questions there. And also regarding the flying topic, just use the search function to search for that or other topics. There have a been a lot of discussions posted on flying and you'll find a lot of helpful tips in those posts.

It's normal to go through good periods of mild to no symptoms and then have bad times that we lovingly refer to as "pots holes". Some people have greatly improved over time and others have not. It's difficult to predict the course of dysautonomia. It's just the nature of the beast.

The best thing you can do first is the non-pharmaceutical interventions that Merrill suggested, in addition to evaluating your diet and supplements to find out what helps and what aggrevates your symptoms. Many of us find that hormonal changes before and during menstruation can aggrevate symptoms, as well as stress, sugar, carbs, caffeine, etc. The triggers can be different from person to person.

I know the palps and tachycardia can be extremely frightening. But you'll find a lot of support and good info on this board that will hopefully bring you some peace of mind.

Adopting a child is big step to take for anyone, but I'm sure your love for your child and the love the child brings to you will be worth it.

Best wishes,

Gena

[MightyMouse]

Hi and welcome to our board. Gena already gave you my suggestion of looking at the "help yourself" section at the top of the forum.

Also, be sure to use the "search" feature to find information about flying. It's come up many times before here and on the NDRF forum too. I think you'll find some very useful info via searching the previous posts.

Yes, the rollercoaster of high and low bp and/or high and low heart rate is normal with POTS. My cardiologist once joked that by the end of the day I've done a marathon after all the heart rate surges I've had in 8 hours.

As for recovery, that's another topic that's come up often. Search the forum and read through the threads. Also, read through the primary site at http://www.dinet.com --that's where you'll find lots of info. Some of the other references, such as the NIH links in the pinned "help yourself" section have info on that too.

Sorry that you have POTS too, but glad you found your way here.

Nina

[Monica2000]

Hi everyone, and thanks so much for the pointers and support. I started reading, but there's enough out there to keep me busy for a long time! I really appreciate how supportive this group is.

I'm afraid I still have lots of questions (at least until I have time to check out all the links here).

To begin with, I'd like to know if my worst symptoms are the most common in others, too.

-- Chest and arm pain, every single day. I had my heart checked and it passed all tests. But when I have palpitations or changes in blood pressure or pulse, chest pain follows right away. All doctors have dismissed it as anxiety, but it's not. My question is, what causes it specifically? The pain doesn't seem to come from the heart. I feel it in the chest wall. Is it caused by the heart itself or by muscle spasms .. or what?

-- Changes in bp/pulse. I know that's the first symptom/definition, so you all have that. But my tachycardia is not really bad. Usually I have low blood pressure (probably caused by this, too), in the 50s, sometimes less. On good days it's 60. When my bp drops and heart rate goes up, it's in the 70s. It doesn't sound bad, but the pounding is terrible.

-- Ringing in the ears ... most of the day, but especially when bp changes. The constant high pitch noise drives me crazy.

Remedies

I read a lot about them, but I'm not sure which, if any (other than meds, which I'd like to avoid) will help with the palpitations. I tried magnesium and it didn't help me.

Compression hose: I guess that keeps blood from pooling in the legs. Does it lessen other symptoms?

Raised head when sleeping -- Seems counterintuitive ... blood flowing away from the brain? What experience did you have with that?

Flights: I'm doing my homework and will make sure to follow the suggestions. I'm just wondering what's the worst thing any of you experienced during a flight? I like to be prepared

As for increasing salt (of which I already eat a lot) and drinking Gatorade -- when? Every day? During the worst symptoms? And how much?

Answers to any of the above will be much appreciated. Meanwhile, I'll keep on reading!

Monica

[EarthMother]

Welcome to the boards. There is a lot of reading, my advice is to take in a little at a time. I know that's easier said than done because we feel like $%# and want to find something - anything - to help. But you've found a good resource and you'll find some things that will make sense for you. I suspect very soon you'll be helping one of us.

Heart palps are on my top 5 list of thing I hate most about POTS. This week+ has been the worst for me since I can recall. It's just the pits. Sorry for you too. As for cheast pain I often get bouts of NCCP. Non-cardiac chest pain. For me it's usually in the chest wall. I notice the pain doesn't get better or worse if I stand up (and get tachy) or not. So that usually keeps me calm that it's not a heart attack.

Good luck on your healing journey.

EM

[tammyokc]

Hi Monica, I'm new to this site, but not new to this disease! I'm in the same boat too and it's hard not to get all our questions answered right away because of the panic feeling that comes from the heart palps and adrenaline and wanting our lives back...NOW! As for all your questions, everyone is so individual and we can only say what has and hasn't helped us.

My bp is around 80/50 and heart rate resting is 110 but any activity and it shoots way up. I just feel like my heart is thudding against my chest wall. I will every now and then have some pain but it's not everyday, maybe someone else can answer that. Some take anti-anxiety meds. (ativan, klonodin, xanax). I would also like to find something natural.

The reason our heart rate goes up and we feel it so prominently is because our hearts have to beat faster to compensate for the low blood pressure. Got to get that blood pumping and back to our brains!

I believe that a lot of the ringing is do to yeast and sugar in our diets. I have tried to cut sugar and most carbs out and that has helped with the ringing but others may think differently. This is just what has worked for me. I drink salt water and not gatorade to avoid all the sugar. It's gross but desperate times call for desperate measures and honestly I don't think it helps all that much. I have always eaten A LOT of salt and my BP stays low. And I think we are supposed to do it everyday and just more when we are having episodes.

I too tried Magniesim to no avail. I used a subliguel (it's a liquid that you hold under your tongue and then swallow). Sometimes I thought it helped but not during the bad tachy episodes.

Compression hose didn't work for me to raise my BP. Just made me hot and sweaty and itchy but again they worked for some.

I tried to raise the head of my bed, but I also thought it seemed counterintutive. Again, didn't help.

I haven't flown in years because of this but others have, so maybe you'll get some feed back on that.

Boy I didn't help you ANY. Sorry! Guess I'm just trying to say, we are all individual and it's trial and error for us all. I keep trying things like beta blockers (to lower heart rate), midodrine and florinef (to help raise bp), and Ativan. I'm just one of those people things didn't work for and I'm super sensitve to meds. The only thing that helps me is Ambien to sleep and I used it before I started having major symptoms so just think my body was use to it.

Hang in there, in time you'll feel more comfortable with Dysautonomia. If there were any quick fixes, we'd all have done it. Just listen to your body, try things in small doses, know you are NOT alone, and keep researching. It's the only way I have understood better why my body does what it does.

The two most helpful articles I read were one explaining the autonomic nervous system and why we feel everything so much more than others (because our sympathetic nervous systems are stuck) and an article by a patient Chris Calder.

http://www.isma.org.uk/stressnw/parasymp01.htm

http://home.att.net/%7Epotsweb/POTS.html

Stick with us!

[MomtoGiuliana]

Welcome, Monica.

I don't think you are irresposible to be in the process of adopting. It is very reasonable to be planning to go ahead with your life. POTS is not life-threatening and many of us are parents, and also choose to become parents after diagnosis.

POTS can be life-altering. However, it can also get better over time or can be greatly improved by lifestyle modifications and medications.

Regarding your question about your worst symptoms:

chest wall and arm pain is a common complaint; I also have had that. It is good to have the tests, even for peace of mind, to make sure that the problem is limited to POTS. I am not sure what causes the pain--it has to do with benign chemical imbalances, possibly. Also some chest pain may be caused by GI spasms. It is not caused by anxiety, even though anxiety is another frequent complaint of POTS patients.

Tachycardia is defined as bpm over 100. If your bpm is less than that it is not technically tachycardia. However, every body is different in how they manifest this condition. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing, by definition.

Ringing in the ears is another reported symptom of POTS. Vanderbilt U has a long list of symptoms associated with POTS. This should be easily available--someone can probably direct you to it--if I find it I'll let you know.

Regarding your question about remedies:

palpitations--some days I just have to ride these out. Nothing helps stop them. Some days a low dose beta blocker is very helpful. Often I find they settle down if I dramatically increase fluid and salt intake. Just keep in mind that if you have been evaluated by a cardiologist and have been told these palps are benign, you don't have to worry about them being life or health-threatening.

Compression hose: by reducing pooling in the legs, compression hose should help regulate bp and thus tachycardia. I have never found a dramatic change in symptoms from wearing them, but other patients find a good deal of benefit.

Raised head when sleeping -- reduces dehydration during sleep, I believe. This is how it was explained to me some time ago.

Flights: Lowered oxygen and the dry air can aggravate symptoms. I was afraid to fly after diagnosis, but I have flown four times and have not had any significant problems. I just kept well-hydrated, and tried to move around as much as possible to reduce blood pooling.

As for increasing salt and drinking Gatorade -- You will have to find what works best for you. And this may change over time or from one day to another. I took salt tablets for quite awhile b/c I didn't like the taste of so much salt. After awhile I improved to the point that just adding a reasonable amount of salt to every meal is all I need. I personally don't like Gatorade, so I often drink watered-down fruit juices mixed with a bit of salt. Again, I think you have to experiment and see what makes you feel better and what your personal preferences are. When I was first diagnosed my electrophysiologist told me to aim to drink 3 liters of fluid a day! I probably drink 1-2 now. He emphasized this over any other remedy.

I know it is a lot of new information to take in. Try not to overwhelm yourself! As I think others have advised on many issues related to POTS, take the approach of the tortoise rather than the hare!

Take care.

Katherine

[Monica2000]

Katherine and all ... Thanks so much again for taking the time to answer my questions. I hope more answers will come over time as I try different things. I feel an urgency to resolve these issues sooner rather than later because of the adoption (suffering aside). But I know there are no magic answers. My first priority now is to try to find a specialist in this, even if I fear he/she won't be covered by insurance.

Thanks again for your support,

Monica

[Miriam Poorman-Knox]

]Monica,

As for the salt sea salt is usually better, can get at the grocery store. Eat id mornin, noon and night. Salt tablets and salt together helped me alot. You need to order the salt tablertts at the pharmacy as they don't usually stock them.

As for long flights--A couple days before the flight dtart increasing water and sodium. Get everything perpared so there is no last minute rushing. Get as much sleep as possible before flight. Take litres of water with you. I drink 5-6 litres in 5 hr flight. Take foof, even if they feed you take a selection of food you like to and can eat. Walk when you can, and do the leg and foot exercises and stretching in your, there is a page in the magazine.

This is a real head scratcher for many. Even those with medication sensitivities there are sooooo many things to be tried.

As for BCP there are many articles stating that stoping monthly menses helps in the loss of blood which helps those with heavy bleeding.

Adoption Yeahhooooo good for you. I had 2 children with this disease and really learned to be on their schedules. Rest when they do. Always have something to drink(non-alchoholic)!!!! And enjoy. I now have 2 beautiful grandsons!!!!!

For me this life altering experience has made me realize andlive my life that

"THIS IS MY LIFE" "THIS IS MY NEW LIFE" I need to adjust for what that entails and each day is different. The good news is that I am not waking up in strange ER's anymore from passing out. LBP

Blessings Miriam

[Guest tearose]

Hi Monica!

I am a little late but still wanted to welcome you!

Here are some of my thoughts on your good questions!

The POTS symptoms that you talk about being up and down are probably making you feel worn out! This is what motivates us to try to find treatment plans tailored to our individual kind of dysautonomia. You will have to try things to see what will work for you. Certainly it is not uncommon that a virus, an increase in physical activity,...major life changes...will make our symptoms increase. With this disorder, severity of symptoms will "come and go".

My exercise input: There are times leg lifts are all I can manage. There are times I have been able to walk on a treadmill three times a week. The key for me has been two factors. 1) always use compression pantyhose when on the treadmill or doing more strenuous exercise. and 2) even when in the potshole (having a setback, rough time) DO SOMETHING to keep active. Even if it means laying down and stretching. Never allow yourself to become "deconditioned".

Flights: The cabin is not pressurized the same on all flights. It can be difficult for "normal" folks to handle a long flight and it is recommended not that normal folks consider wearing support hose and do leg exercises so it is even more important for us to do so. Also, water, electrolytes and small snacks will help.

I don't know of anyone who actually died of dysautonomia but it may be an early sign of another process that may bring on your demise. I don't think it is necessary or good to go down that path unless you are having other symptoms too. I think you will see times of great improvement and you may even "forget" you have pots! Then there may be times where you visit the "potshole" as we call it...when you hit bottom...these can be physical setbacks, emotional setbacks, spiritual setbacks...we don't judge you, when you are there, you are there. It just means you are having a rough time and have to sit still for awhile and regroup and move on when able to.

I didn't use contraceptives but I clearly suffered from hormonal swings and these made my pots symptoms worse.

I am very happy that you are in the process of adopting a child! There are so many children who need good, loving families! Having a physical challenge will not change the love you are able to give! Go for it! It will be a most rewarding life altering change for you, your friends and family and your child! I am sure.

Hope you are working on getting a treatment plan to help you feel better!

best regards, tearose