It'sMyLife

Varieties of POTS that result in sympathetic excess - such as b-receptor antibodies or any etiology where sympathetic activity is potentiated could result in sensitivity to normal adrenal fluctuations as a result of normal blood pressure regulation. Sympo-excitation would leave a patient subject to symptoms from even minor excitorary stimuli:

Result would be psuedo hypoglycemia with normal blood sugar levels.

This HAS to be what is going on with me. I have sworn I have hypoglycemia for years, but when I finally got tested it was totally normal. And, I actually didn't feel too awful during drinking all that glucose for the test. But, I swear, if I go too long without eating a FULL meal I crash and then, no matter how much I eat, I feel like crap for a quite a while after. ramakentesh- would you happen to have a source for this info that I can take to my doc?

Additionally, did you hire a lawyer before you even started your application process?

Thank, Flop!

Darcy,

if you have some hypermobility then it is worth getting evaluated for Ehlers-Danlos syndrome, not everyone displays all the signs. In the UK the diagnosis is made by rheumatologists but I think in the USA people usually see a geneticist for the diagnosis. It is probably worth getting checked out.

Flop

Is there a link to a site that tells you what a person's disability income would be?

Maxine,

I have shoulder problems from sleeping on my side too. My shoulder is often scrunched up underneath me and most uncomfortable. I have quite broad shoulders so I actually put a thin normal pillow under the Ikea one to keep my spine in a straight line horizontally and reduce the squishing of my shoulder.

Flop

I've never met anyone else who has "the shoulder problem" before. I was told in high school, during a sports physical, that I had hyper-mobile joints and I've always thought this is why my shoulder bothers my while sleeping.

I've read a little about EDS, but I don't have the skin symptoms that go along with the hyper-mobile type.

For those of you with head-neck pain issues, what kind of pillow do you sleep with? As I posted elsewhere, I've been diagnosed with cranial-cervical instability, and the base of my skull/top of my neck is extremely sensitive. I need support but not pressure. I can't count the number of pillows I"ve tried (I'm a back sleeper)--usually either too much pressure or not enough support. I still feel a big crack at the base of my skull along with a headache when I move in the morning--meaning I guess that whatever I'm doing isn't quite enough? I currently use a contoured memory foam pillow, but wonder if there's something better.

Do you mind if I ask how you got your diagnosis of c-c instability? I've been seeing a chiro for years but never been told that I have this. I'm thinking maybe they've just never put it in that exact phrase.

I had a sleep study about three years ago. Mine was normal.

Yepp.

Possible reasons:

Blood pressure variations (lowest in AM)

Norepinephrine levels and stores (highest in AM)

Hydration lowest in AM

perhaps even melatonin lowest between 7am to 2pm??

So, are you saying that having the highest norepi stores in the am is what you think contributes to you feeling the worst in the am?

Thanks for sharing!

I didn't have time to fully read through all the replies, so forgive me if I repeat what has already been said.

I have a very good friend who's husband always wanted things to be 50/50 financially even after they were married. Ugh! I could go on for a while why I thought this was wrong, but don't have the time. But, somehow she ended up doing way more than half (read: all) the housework. Hmm? Fair? Not!

She always said she was choosing her battles and that wasn't one she wanted to have with him. She thinks once they have kids it will work it's way out. Since he/she will be their kid then the money will be theirs instead of his and hers. Having kids never works anything out!!!!

I know someone stated that since you're not married, fairness and half n half are a little harder to address. I agree. Marriage is not about 50/50. It is about each giving all you can. Resentment starts to build when you feel that the other one isn't giving their all. Then, you find yourself starting to cut back until you see your spouse match what you've done.

I don't want to venture too far away from the subject but I'm just going to throw one thought out there: Where is your relationship going? You are already living together. Are you thinking marriage? Are you just going to live together indefinitely? This is not a judgement. It's just to figure out what kind of advice to give.

I personally seem to hear about the most relationship troubles from couples who are cohabitating but not married.

If you have already tried to get your boyfriend to understand POTS and that your ability to contribute will rise and fall, and he still seems resentful. Then, I think you need to decide if you really want to hang on to him or not.

I'm not trying to sound negative. I want to encourage you. But, realistically it seems you've already done what you can. So, maybe you were just hoping that you weren't the only one going through this. I think the following is good advice from a previous post. I know having POTS can really isolate you. I have had serious issues with being alone in the past so I really know. The best advice I can give you is to ask yourself if you are merely afraid to be alone or truly value what you have with your boyfriend and think it is really worth holding on to.

One other thing to think about in a relationship is to not settle. When you are sick you may forget that you deserve respect and kindness. Also you see the best in you partner BEFORE you get married. My husband and I never even argued before we married. Make sure that you are treating yourself with respect and not settling for less then you deserve. Life is hard with and without POTS and being with the right person can make it eaiser but the wrong person makes life harder... just my two cents... good luch and I hope you are feeling well. You need to take care of your-self because you are more important then a clean bathroom! Best wishes

I'm looking for one and wondered if you had any suggestions. Thanks!

Thank for sharing, EarthMother. That's really interesting.

Thank you so much for sharing!

I almost always feel better later in the day. Say, from dinner time on. I usually feel real crappy right before lunch. Anyone else and why?

I understand you have to do what you think is best for you. I am still going to strongly encourage you to speak to someone at the clinic who works with the doctor you will be seeing (who will be ordering the tests). Your cardio can tell you what is safe for you but he will not be able to tell you what the doctor at Mayo needs in order to get accurate (diagnostic) test results. It would be a bummer if you got there and found out everything would have to be postponed because of your current medication regimen. I also understand that going off of your bb and then flying out there could be dangerous for you. Maybe if you can speak to someone at the clinic and tell them about what your condition is off of the bb then they could arrange for you to stop it once you're already there and they can have tests scheduled for X amount of time after that. In additioin, they would be prepared for you if you need medical intervention from stopping the bb. I wish you the best of luck.

So you contacted Mayo and this is what they advised?

You are so welcome!

Chelsea Therapeutics, Inc in Charlotte, NC. is the pharmaceutical company sponsoring it and the principal investigator is my cardiac EP in Greenville, NC.

In my experience, the (very good) dentists I've worked with would not advise premedication in your case. This is in light of the change in AHA guidelines in April of 2007. This is also assuming you've never had a previous episode of bacterial endocarditis. I have included a link from the ADA written for patients that might be easier for you to understand than those written for medical professionals (or those frightful stories written by lay people who probable leave out all but the scary parts!). I hope this helps. Please remember that is not a substitute for medical advice only my experience as a dental professional.

American Dental Association guidelines for premedication

Stopping a bb will also cause a rebound tachycardic effect and you should never stop one cold turkey unless maybe you're subbing with a new one for the very next dose. The same goes for the SSRI in that you should def wean off and not stop cold turkey. You could have some transient depressive symptoms after stopping the Lexapro as well and need to be prepared for this. (This isn't a replacement for medical advice, so please keep that in mind.) It burns me up so bad when medical professionals tell a patient to stop their meds with no advice on how to do so or what the effects of discontinuing could be. When I found out I was pregnant the nurse on the base (Air Force) told me that most of my meds were Category C and I should stop them all. Had I been less informed about my meds and not be consulting with my psychiatrist and PCP before trying to conceive, I may have encountered a major (life-threatening) depressive episode to say the least!

It still blows my mind that I, as a dental hygienist, have as much, if not usually more, schooling than nurses and in the dental profession it is still illegal for dental hygienists to administer local anesthesia in most states! In addition, most states don't allow hygienists to work without then dentist in the same building as them regardless of what we're doing. We also can only work in a ratio of two hygienists per dentist in any office setting. And, nurses can work hotlines and give advice to patients without even consulting the doctor on issues way more pressing than a toothache or bleeding gums!!! Sorry about the rant! lol

How soon before your appt do they want you to stop your meds?

Suzy,

I am a dental hygienist and might be able to shed some insight on the premedication issue. First, if you don't mind telling me, what type of heart condition do you have that the cardio initially advised premed for? You are right about the AHA. They have changed their guidelines quite a bit in regards to antibiotic premedication. They are recommending antibiotics for very few conditions now. I know this is not a substitute for medical advice, but I can at least tell you how I am treating my patients in conjunction with the dentists I work with. Hope I can help.

Well, I signed consent for the trial on Thursday. I go in Tuesday for my first visit and will have a physical and lab work done as well as orthostatic vitals (referred to as the standing test). I have to start the med within 7 days of this appt and return daily (for up to 6 days) for dose titration. Once the dose is at a therapeutic level for me, I'll stay on it for 7 days. After 7 days of active treatment, I will discontinue med for 7 days. I will then return for either a 7-day supply of the Droxidopa or placebo (double-blind) and return after those seven days are over. I will have more testing and this will conclude the study.

If I do not get improvement of symptoms after dose titration up to max allowable dosage, I will be removed from the study. If I do have improvement and wish to remain on the medication following the study, I can enroll in an extended study. I would be on the med for 12 months while they followed me for long-term side effects and by then the FDA should grant approval.

Well, I signed consent for the trial on Thursday. I go in Tuesday for my first visit and will have a physical and lab work done as well as orthostatic vitals (referred to as the standing test). I have to start the med within 7 days of this appt and return daily (for up to 6 days) for dose titration. Once the dose is at a therapeutic level for me, I'll stay on it for 7 days. After 7 days of active treatment, I will discontinue med for 7 days. I will then return for either a 7-day supply of the Droxidopa or placebo (double-blind) and return after those seven days are over. I will have more testing and this will conclude the study.

If I do not get improvement of symptoms after dose titration up to max allowable dosage, I will be removed from the study. If I do have improvement and wish to remain on the medication following the study, I can enroll in an extended study. I would be on the med for 12 months while they followed me for long-term side effects and by then the FDA should grant approval.

I like to say it might not be life threatening but it is definitely quality-of-life threatening.

Oh, I see now. Thank you for sharing. I'm sorry you got sick but glad you were able to make it to the zoo. When my POTS had a terrible flare (immediately after having my daughter and hemorrhaging) they readmitted me to the hospital to rule out many things. One of those things was cardiomyopathy. They said some women develop an enlarged heart after giving birth and it only gets better with time and rest. Turns out it was POTS and not the other, but I didn't get my Dx until a few weeks ago and my DD turned two in April. So, I see how over working makes the heart larger and why they thought that could be it for me. It was obvious my body was not keeping up at all.