Hope your week is starting off on a good day.
~Tonya
Yes! Thank you for taking the time to write all of that information. Very Helpful.
The main source of research (Drs. Esler and Lambert have published from Baker Institute in Melbourne, if I recall correctly)/information/fundraising for orthostatic intolerance disorders such as POTS in Australia is The Baker Institute:
http://www.bakeridi.edu.au/support/greg_page_fund/
http://www.bakeridi.edu.au/contact_us/
I would think this would be an excellent resource for you, even if you don't want to change doctors. Your doctor may be able to consult with specialists there if s/he has questions about your case, or depending on your location and the locations of their hospitals, you might be able to see one of their doctors on a consultation basis once or twice just to give some guidance to your main doctor's treatment plan. Many dysautonomia patients in the US coordinate their care in this manner, making infrequent trips (or just one trip) to a major dysautonomia clinic for diagnostic testing and to get recommendations on a personalized treatment plan, and henceforth their care is managed by their local physician/specialist with the doctor at the dysauto clinic available for follow-up on a consultation basis as the need arises, either by phone or in person if necessary.
There are many "durable medical supplies" that can make life easier on those of us with dysautonomia. I personally do use one of those "rollator walkers" (the ones with the seats) and find it indispensible as I can quickly sit on it to avert a faint if I feel one coming on. I also recommend getting a wheelchair for bad days. The ones that recline are AWESOME for dysautonomia, and aren't prohibitively expensive if you look for used ones. On the other hand, regular wheelchairs are more lightweight and portable than the reclining ones so it depends on how bad your orthostatic intolerance is and whether you regularly get relief from merely sitting or need to fully recline to stop an "attack." Another thing I would recommend is getting a shower chair to reduce fatigue and other symptoms in the shower (blood pooling and subsequently tachycardia is increased during showering due to the heat; bathing without supervision--unless you like cool or lukewarm water--is not really advisable for those with dysauto due to the risk of fainting from heat intolerance and subsequently drowning. Hand-held shower heads make showering on a shower chair a breeze. The final thing I recommend you try is compression stockings. They're not glamorous, particularly comfortable, nor easy to get on/off, but many find they do provide noticeable symptom improvement (enough to outweigh all the aforementioned downsides to wearing them). Stateside they are available by doctor prescription; for POTS, patients get anything from 20-30mmHg graduated compression through 30-40mmHg all the way up to 40-50mmHg graduated compression. You will need at least thigh highs for them to be effective; it's at your discretion whether to go for waist-high or not. Many of the members of this forum seem to prefer the thigh-highs as they are more convenient for using the restroom and some find that the waist-high ones are uncomfortable in terms of exacerbating abdominal symptoms like stomach pain and nausea. If you search for "compression" in the little search bar in the right hand menu bar of this page where it reads "Search This Community" and hit the green "Go" button, you will likely find a wealth of threads where we've discussed the pros and cons of our hose, and some tips about buying and wearing them.
You may find it helpful to make a list of things that you are comfortable saying to strangers in different situations to get your needs met with minimal awkwardness. One of my biggest struggles before I got my rollator walker was standing in lines; it was impossible for me without fainting, so I often needed to ask a stranger to hold my place while I found somewhere to sit off to the side as the line continued to advance (lest I need to "scoot" along on the floor the whole time--ugh!) until my turn came up and I could rejoin my place in line. I would absolutely DREAD this situation because I didn't want people to think I was just lazy, or other people further back in line to think I was "cutting" when I got up. I scripted for myself, "Excuse me, I'm sorry but I have a fainting disorder and I cannot stand for prolonged periods without fainting so I need to take a seat. Can you please hold my place in line for me?" I wear a medical ID bracelet and I point to this as I speak, which bolsters my confidence that the person will not think I am making something up. Because I say the exact same thing every time, I have LOTS of practice with it now, and it has become something that comes naturally to me and causes me no anxiety, and people are VERY friendly and considerate about it. Depending on the person/situation I variously say I have "a rare disease," "a fainting disorder," "a neurological condition," or "a chronic illness," all of which are true but which highlight different aspects of dysautonomia depending on the point I'm trying to get across.
My final thought is that you listed quite a few comorbid conditions with which you are struggling. Is your main doctor referring you out to specialists to tackle at least the biggies out of those? My thought would be that at the least, you should consult with a pulmonologist/allergist to try to absolutely minimize your asthma and allergy symptoms as those can be a major trigger in terms of flaring up dysautonomia, and you should consult with a neurologist who can tackle those migraines because that's generally not something a general practitioner is as knowledgeable about as a neurologist who specializes in that will be. Are you taking a migraine preventative already? If so, do you have a PRN migraine medication for breakthough migraines? These are the two things that a neurologist would likely set you up with and monitor to make sure you have the most effective ones (and dosages) for you. Again, because of the interplay between dysautonomia and migraine, it's important to keep these in check. Of course, it's also important purely for your comfort/sanity!
Hang in there! The pieces of this puzzle will start to come together for you as you start to find the right combination of medications, lifestyle changes, medical equipment, etc. to make your life go more smoothly. There is no question that this is a stressful disease, but you're doing all the right things to keep things moving forward. And we're all here for you, so feel free to post as much as you like or just hang around and lurk and read what others are saying. We're a pretty friendly bunch when we're not passed out on the floor. :-p
Take good care of you!
-Heiferly
Hi there. i can certainly understand how you are feeling.
Now from your forum name you have (4) children and that alone is a big responsibility which is tiring......i KNOW I have (5) children w/ in a 4 1/2 yr period (nope, no twins!)
Anything you need to do to make YO feel better and give you more energy and to be able to do more w/ the family (by conserving energy) than just do it! That includes a wheel chair when you need one. Learning ways to adapt your life around your AD is helpful. nope, it is not going to just disappear (at least you are not in denial), but.......a little adjusting and tweaking here and there will help you immensily (sp).
I also have Multiple Sclerosis as well as NCS so some days are a living He** not knowing which one is going to cause me trouble on that day and sometimes they both fight for my attention.
Please be kind to yourself! If you are able...take at least one day a week when you can go to your room, shut the door, read, listen to music, meditate, or whatever it is you like to do......and do it......If you have a close girlfriend ....go to lunch ordinner or a maicure or pedicure......The point is, don't forget about "YOU" Do not let this AD make you who you are not...
Big Hugs to you <3
~Tonya
I got POTS my jr year of high School (Diagnosed a year and a half later) and so I know what it is like to be a teenager with POTS (I am now in my first year of college - which I didn't think would get to happen once I got POTS, but it gets easier to manage - although your son's case sounds worse then mine). One suggestion instead of a walker is a cane that folds out into a chair. My sister got me one last christmas and my friends actually think it is COOL - its is very helpful for when I know I am going to need to sit down. If your son ever wants someone to talk to online who actually believes him, message me. I know it can be so hard and would love to give him some advice.
I have POTS and live in Boston and have similar reservations about riding the subway that you do with the bus (I am 18 and don't look sick). One thing I do is carry a cane and then people usually will stand up for you or will be nice if you ask for a seat. When I don't carry my cane I am usually shy about asking for a seat and end up nearly passing out every time...don't do that (I'm just not good at asking for a seat). One time I sat on the floor and someone kicked me and told me to stand up - we all have these problems and it stinks because you don't LOOK sick. But the most important thing to do is just remember that you ARE sick and don't let any doctor convince you that you are exaggerating and work until you find a doctor who trusts you and believes everything you tell them.
In terms of worrying about falling back into depression - try to bring the people to you. POTS is SO hard because you never know when you will be feeling crummy and so its very hard to make plans. What I learned to do is limit my friends to just a few close people who don't care if I cancel all the time - but who I also feel comfortable just inviting over to chill while I nap. One great thing is a movie night where you have some friends over to hang out and when you get tired pop in a movie and rest while they watch. BUT make sure it is at your house and with people you feel comfortable sleeping around. Two thanksgivings ago I ate a bigger meal then I should have (too much food i a big trigger for me) and had to nap at my boyfriends house, but you get used to do random stuff like that. And when I go out with friends back home (I am in college now - which makes the dynamic a bit different) they drive so that if I am having a bad day I don't have to change plans. I hope this helps, but feel free to ask any questions about having a social life and POTS - it is such a struggle.
Life with POTS isn't easy for anyone. We in the US aren't in too much better shape. There are few doctors who know about it and when you tell them, they think you are just nuts. They don't believe that you have all the issues you tell them of and don't believe that meds affect you in such strong manners. They classify you with a mental illeness that you've made up and caused yourself to have these symptoms. Put that in your chart and let it follow you everywhere then no doctor believes your problems are real.
At least here, we have riding carts at the stores to shop for groceries. Those walkers with the seats are a good idea. If you get tired at least you don't have to sit on the floor. The illness itself makes you feel OCD or anxious. It's not necessarily that you are but there can be adrenal involvement and it makes those symptoms happen. Try not to let POTS be who you are, but a side issue you have to deal with. Don't totally lose who you are to it. Try to find some JOY in life and something to laugh about. At times it's really hard and I need to be reminded of what I just said to you, but just knowing that there are others out there who are dealing with the same issued-- makes life better. We're not alone in this. There is a reason to live. If nothing else to encourage someone else to keep going.
One of the first things you can do is get yourself a MEDICAL ID BRACELET and make sure it's visible on the bus! I got one for my son from a company that will inscribe any info. you want. Look online. (I used American Medical ID)
I finally broke down and got my son a wheelchair when I realized this problem wasn't going away anytime soon. I've also considered the walker with the seat for him, as he feels so bad sometimes, ha can't even get down the hall to the bathroom without squatting to rest. (I know he wouldn't use it though).
My son does not like to take medications, (he isn't taking anything for his POTS-like symptoms), and I have read that so many people are not helped by these meds. anyway (although some are, if they are able to find the cause).
My son is socially active only on the internet. It keeps him occupied and takes his mind off his troubles most of the time. But he is 14. I don't know how he mentally deals with this everyday! Occasionally he feels overwhelmed by his health problems, (usually when someone online doesn't believe he can't walk, etc.) and we have a good cry. But then he goes back to being his happy, silly self.
We have hope. That is what keeps us going. I keep looking for answers, and he waits for me to find them. We get a bit depressed when a new doctor or a another test, fails to change anything, but we don't quit.
Are your cortisol levels too low? That could contribute to your anxiety.
Hang in there. You will survive.
Enzy