Poohbear

Wanted to see what thoughts or input the rest of you have on this topic. I was first diagnosed with NCS many many years ago. In time I got worse (different symptoms) and they then added POTS to the mix. They've also been able to determine (although it's taken years to actually catch enough data on EKG's and monitors) that I do have true intrinsic IST as well. For many of these years I've dealt with cardiologists. Both Vandy and Dr. Grubb come from cardiology backgrounds . In time as I've learned more and seen how dysfunctional my entire body is I wonder......are these guys still missing something? It's not my intention to put them down and I don't want to sound that way. I've been helped in so many ways by these guys. POTS= Postural orthostatic tachycardia syndrome. Even the name implies more of a cardiac problem. In fact my local cardiologist says the disorder is a cardiovascular one. I think since it involves the autonomic nervous system that it is equally a neurological problem yet the neurologist say "no" to that (although I don't understand why). I understand the cardiac components of this disorder may appear, or even may be to some, the most debilitating and dangerous symptoms. Personally, I wonder if at least for some of us, if we aren't misdiagnosed again. I definately have the symptoms of POTS and NCS however, I also have symptoms of a much bigger and broader problem that are not helped by any of the meds used to treat POTS. I have debilitating symptoms that effect almost every major body function I have. To me, that adds up to something that is really much more complex than only POTS as they've defined it to date. What do you all think?

Hi Kate! Welcome! I'm glad you found this site but certainly not glad you had a need to find us. I have been dealing with this disorder in a big way for the past 10 years (in smaller ways prior to that). You will find that everyone is different; some people are responsive to different medications and lifestyle changes and are able to manage their disorder very well. Other people have tried every medication out there and every non-pharmacologic treatment with little success (or at least not enough for them to live even a semi-normal life). I've experienced every gamut in dealing with this disorder. Some of those years I was able to hold down a very active and challenging career; now I'm no longer able to do that. Try not to panic or borrow worries. You are right....the information in the beginning of this can be overwhelming. Sounds like you are able to handle school so that's a GREAT thing. It is sad that you've lost some friendships because you can't "keep up" socially but I promise you in time you will see that they weren't really friends (not that it doesn't hurt you though). YOU are your best advocate and the only one that can "fight for your life" so to speak. Try different things to see what works for you (please visit the main pages of this website outside of the message board) and you may find that in order to function you have to be very cautious about your sleeping habits, eating habits etc etc. http://www.dinet.org http://dinet.ipbhost.com/index.php?showtopic=1954 http://dinet.ipbhost.com/index.php?showtopic=4411 Happy reading....but try not to overwhelm youself. Life is all about trying to achieve a balance

I think one of the hardest things in dealing with this disorder is adjusting emotionally to the ups and downs and trying not to have too many expectations from ourselves. I don't know what will work for you because we are all different. It took me a long time to get to the place I'm in now. Generally speaking though when I have bad day or symptoms flare I try to "roll with it". Sometimes that means lying in bed or on the couch with a favorite DVD or book. I may write a note to someone, color, talk on the phone...whatever is a quiet activity that doesn't make my symptoms worse yet gets my mind (at least slightly) off of how bad the symptoms are in that moment. Sometimes this doesn't work. Some days you reach your point where you are frustrated and angry and you need a good cry. Although that's hard too because it can be so draining on your body and make you feel physically worse. I find it difficult to plan things. If I'm having a good day and able to get things accomplished then I really try to do as much as I can and enjoy the day knowing and preparing for the next few days to be virtually useless to me. Sometimes I "pay" for the active days and sometimes not , but if I don't expect myself to get things done after a very productive day then I'm not as disappointed and thus, not as frustrated.

Amber, Most likely you will find that it's going to be difficult at best to find a local Dr who understands POTS. Even the ones that do often do not understand the impact it has on their patients nor do they really understand much about how to try to manage the disorder. I say this not to discourage you but to try to prepare you so that you will be armed and ready to fight for yourself. Look around for an electrophysiologist in your area. This is a specialist within the cardiology field. You may want to call around some local cardiology offices in your area and ask if they have an EP specialist and then ask if they are familiar with diagnosing POTS or neurocardiogenic syncope. The most important thing is that you will need a Dr that will be respectful to you and one who won't be afraid or have their ego hurt if you take charge of your care. Do your research, print articles from the internet and ask them to look into it. If they are not willing to do that then find another Dr. Good luck to you! Keep us posted.

I'll ask around in my area and see what I can find out.

Michelle, Are you wanting the same brochure you printed last time? (I'm asking so I can show a couple of people what it is--color, two sided etc). Thanks!

I have migraines that are directly related to POTS but then I also have migraines that occur the same time each month in my cycle. I too, went to several Dr's who, to be honest, weren't very knowledgeable (even though THEY thought they were). I found a wonderful gyn who specializes in hormones related migraines. My blood work on hormones shows "normal" however she did the hormone saliva testing because it's much more accurate. I've done a lot of research on it and though some are critical of it when you read the science behind it it really makes sense. It's designed to test your hormones at a certain time in your cycle and it measures the levels in your body that are available for you body to use. Similar to the concept of having a calcium blood test that may show "normal" but when they do an ionized calcium it shows the amount of calcium available for your body to use (which may not be normal and thus treating it can then improve your condition.) Have you kept a log to see if any of your migraines occur at the same time in your cycle? Here is a link if you want to learn more and you should also do an internet search on saliva testing so you can learn more about it and make the right choice for you. http://www.salivatest.com/ I do not tolerate hormones well at all but if I use bio-identical hormones in only the amount I need (it's compounded for me) then they have brought me much relief. It is more expensive this way but I believe it's healthier and have tolerated the bio-identical well when the synthetics I could not tolerate. Just one avenue of many I'm sure for you to think about

I agree....this is nothing any of us here are qualified to really comment on. You need to see your Dr

I have met with a dietician before but I can't really offer you much advice because my goal was to discuss how to get the sodium and potassium I need in the midst of all the food allergies I've developed. You may want to let them know you are supposed to have increased sodium in your diet. Vanderbilt recommended 8-10 grams a day which if I remember right translates into 8,000 to 10,000 mg. You should check with your Dr first though. Let us know how it goes!

I agree with asking pharmacist about possible drug interactions. If that doesn't turn up anything though a urologist is a good idea. It's been a long time since I went to one but they did some type of scan where they inject a dye into the bladder and then take xray to see how your bladder is functioning. It wasn't painful and they ruled out anything serious. In my case it appears my bladder problems are "simply" autonomic related. I self cath when I need to and on days where I go frequently I just put up with it because for me, I switch between extremes so medication hasn't been helpful.

Congrats!

Sorry you are feeling so miserable. Chances are there is nothing serious going on but you do need to have things checked out. I have all the symptoms you describe, as well as others, except for the nose burning. My symptoms vary in intensity and seem to rotate around from time to time but in my case it's all being caused (to the best of my Dr's knowledge) by the autonomic nervous system Hang in there. Hope you get to feeling better soon

Thank you Thank you Thank you!!!! This is so cool and I'm so excited!! The photo's will really help me too since I can't get out to take a class.

I stayed at the Best Western Soldiers Field and it was ok. I stayed at one of the "suites" which was actually across the street from the main hotel but it had a living area and full sized fridge, stove etc so we could make our own food. The rate was pretty good; call and ask for the Mayo patient rate (that's true of anywhere you call...be sure to ask if they offer a mayo patient discount). In terms of length of stay I ended up being there 13 days. You basically have 2 choices in this area 1- Get your ticket for return no sooner than the weekend (Mayo does not testing or consult on weekend). If you can get your initial appt for a Monday that's best because that at least gives you the full week and you could fly back Saturday Morning. I saw some people who simply told Mayo, "my flight leaves on X date" and they TRIED to work with them however, I saw some people who had to go home unable to have all the testing done because of this as well. It's a gamble. 2-Set a date to return but make sure you have the ability to change the return date if needed and find out ahead of time what that charge will be. Don't purchase a ticket until you understand if you can change the return date. It used to be $50-75 to change perhaps but I would email the airline and see if you can get a written response from them (to hold them to their word). Ask if you provide a letter showing you are traveling for Medical care if they would be willing to waive the extra fee if you need to change your return date.

I can see where the added salt at night would help you. The chicken broth at night is a good idea too. I've been very sick the past few weeks with some type of GI problem and I'm pretty much living on organic chicken broth, gatorade, saltines and jello (with an occasion 'nilla wafer ) This way, even though I can't keep much food down I can attempt to keep my potassium and sodium up

You are in a tough spot for sure. I've not been married so I don't have words of experience. If I was in your shoes though (and myself having watched many of my healthy friends with failed marriages), I would make sure I shared my feelings with my boyfriend (preferably on one of your better days). I would do my best to make sure I voiced my feelings and concerns about the relationship and the future. Then I would write down what MY goals were and what I expect from a marriage and from my husband. I would ask him to do the same. Once you've both written these things down, read what each other wrote and see how close your goals are and if you think marriage would work for you. I would also let my boyfriend know that I know my illness impacts him and I both understand and expect him to have frustrations, anger etc over this illness. That's ok as long as you both work not to take your feelings out on each other. I think the more things you can try to "plan for" up front and discuss the better off you will be and the more confident you will feel in your decision. Like, do you both want children? If so, and your health is not so good do you have other relatives that could help out? Do you both have support family/friends to turn to when your partner is stressed and needs to vent? etc etc.

Thanks for posting this!! I had heard this before so I have already programmed my cell phone with "emergency contact" and listed three numbers in it for someone to call if needed.

I've seen several times recently where some of you have referred to the vanderbilt guidelines about driving. I just want to point out that we need to keep in mind that these are only guidelines. The laws vary by state so you would really need to check with your local DMV office to find out when you could attempt to drive again if you've had episodes of syncope. Where I live, you have to go one year syncope free before they will even CONSIDER allowing you to drive. Commercial liscense is ever stricter (ie--I will NEVER be allowed a CDL in my state---not that I would want or need one but they are tough). Also, keep in mind that even if your Dr or state does not restrict your lic. if you are diagnosed with any medical condition and there is any documentation in your medical file that you have trouble with syncope, then if you are in an accident involving another party they will most likely be able to sue the you know what off of you.

Thanks for the info Nina & Roselover!! I can't wait to look into this more and try it all out myself!

I'm not good at all with tying knots. How successful do you think I will be with making a braclet??? I'm also not good with instructions (I do better with someone showing me). I'm interested but I'm afraid of spending a lot of money and not being able to do it. What do you think? How difficult or easy is this? Thanks for posting this!!!

Glad you got home but I understand you've got a difficult road ahead of you, at least in the short run. Hope you feel better with each passing day and that your Mom can stay with you a couple of days to get you settled back in at home

Futurehope, Yes, it was a hospital social worker that recommended assisted living. I agree it may be a good idea but I don't have the $ for it. No, Medicare does not pay for assisted living. You either manage on your own (if you don't have enough $ yourself) or you get so sick to where they put you in a nursing home. Dawg Tired, You are right. The "system" is set up so poorly and many people who truly need help don't get it. Where I live there are tons of people here illegally and THEY get FREE service and I can't even get a low $$ service let alone anything free yet I paid for many many years into these services. It's awful. Futurehope, one of the best pieces of advice I could give you that may "pay off" in the future is to try to purchase a long-term care insurance policy that would pay if you needed either home health care or nursing home care. Shop around and compare policies carefully. Hopefully you could qualify for a plan. I know an elderly woman who has long term care and she has home health care coming in 6 days a week for 4 hours a day; if she didn't have this she would be in a nursing home which would cost much more than home health and luckily she has a policy that pays for this home care. If you can't qualify for a policy then if possible, set up a special savings account of some type to "ear mark" money for self pay home care if/when you need it.

They sound like POTS symptoms but they also sound like symptoms of MANY things. Do you have a good Internist to start with? My suggestion would be to rule out diabetes or hypoglycemia, thyroid problems and other "common problems". Maybe see a cardiologist and ask for a 24 hr event monitor so they can record what happens with your heart during these episodes.

Thinking about you Were you able to make it home today? I hope you are able to rest comfortably and are feeling better!!

I have a pacemaker but it's not for the treatment of POTS. It was for NCS and the extreme bradycardia I get. I have both NCS & POTS and the pacemaker has helped eliminate some episodes of syncope however, I still have syncope due to bp drops and I still have horrendous tachycardia. The other thing most EP cardiologists will tell you is that having the pacemaker is no guarantee that you will be able to get off the beta blockers. Our bodies are all different and some people can get off of them and some cannot. I was able to get off all meds after implantation of pacemaker but then about 5 yrs. later I had to start back on the bb's.