Poohbear

That's great!!! I'm excited for her

Sophia,

Just to clarify...the comment about POTS not being seen in people over 50 is outdated and none of the top specialists say that anymore. They now know more and know better!! Thank Goodness for that!!!!!

In reply to your statement, "Why couldn't you take certain ones? I am taking one and it has kept me out of ER, but how would I know if I am getting side effects? Maybe some of the other things I get are the BB and maybe not. I don't have the usual side-effects listed in the PDR, etc., but you are all the experienced ones."

I would say that if you don't have symptoms since taking your new meds that interfere with your ability to function or make you feel much worse then try not to worry about it. If you have a symptom that is bothering you then talk to your Dr to see if maybe changing your med or reducing the dose would give you the benefit you need but reduce the discomfort of the side effect.

Hi!

While I think Dr. Grubb is great, I wouldn't call him the "ultimate" POTS specialist.

He is one of the better known specialists though.

If you want more info see this link and scroll down to Ohio http://www.dinet.org/physicians.htm#United%20States

Yep!! Around here just about any symptom you could have would be considered "normal"

See..."normal" just depends on who you are around

Julie,

I'm a bit confused. From what you post about his blood work, his D-dimer is within normal range (anything less than 552 is normal, his troponin is elevated but it's not considered positive until it is 0.99 or above.

His catecholamines are high upon standing which goes along with POTS.

I understand that he is sick but it doesn't appear he needs to be hospitalized based on his bloodwork.

Sounds like he definately has something going on and needs treatment but it doesn't sound like he needs to be hospitalized.

In terms of SSDI, as sad as it is, they don't care if you have no money or become homeless; they only look at "Can this individual work? Does his illness interefere with his ability to do work? and Do his records support this? And "Will this condition last more than a year or result in death" ...if they don't have the objective evidence to support his claim they deny it. It's is incredibly unfair how the system is set up but that is the reality. The best advice I could give you in this dept. would be to have him contact his local congressman and ask for help. I would also urge him to obtain all of his medical records himself to provide to Social Security and to request his Dr complete a functional capacity evaluation of him to submit to social security along with a letter from the Dr stating he is not expected to recover or be able to work for at least over a year.

Here is some additional info on a high ALT from a website

"WHAT CAN CAUSE THE LEVEL OF ALANINE AMINOTRANSFERASE TO BE TOO HIGH?

To begin with, since there are many reasons why ALT levels can be high it is important that additional testing is done to determine the exact cause. When an organ or body tissue is injured, increased levels of ALT are released into the blood. The greater the degree of tissue damage, the greater the degree of ALT that is released. When ALT is high, the most common cause is liver damage. The liver is the largest organ in the body and is responsible for filtering (removing) harmful chemical substances, producing important chemicals for the body, and other important functions. Long-term or sudden liver damage can cause a rise in ALT levels.

Damage to other areas such as the heart, muscles, lungs, pancreas (a long organ in the back of the belly) or the kidney, can cause the levels of ALT to increase. The kidneys are two organs located on each side of the spine, behind the stomach. The kidneys filter (remove) wastes from the blood. Inflammation of the heart can also cause high ALT levels. The ALT levels usually are only mildly increased after a heart attack.

If the ALT levels are very high (up to 50 times higher than the normal range), chances are that the cause is liver damage caused by viral hepatitis (an infection of the liver that causes liver inflammation), drugs, or chemicals. People with hepatitis may have ALT levels that are 20 to 50 times higher than the normal level. However, patients with tumors (types of abnormal tissue) of the liver or cirrhosis (a type of disease that destroys the liver) usually only have ALT levels that are 2 to 4 times the normal level. People that have mononucleosis may have high ALT levels. Mononucleosis is an abnormal increase in a type of white blood cell in the blood. A cell is the smallest, most basic unit of life, that is capable of existing by itself. White blood cells help the body fight against infections.

People who abuse alcohol may have mild to moderately increased ALT levels. In addition, high levels of ALT can also happen when people drink to much alcohol and take acetaminophen. Acetaminophen is a substance that fights against fevers and infections. An example of a medication that contains acetaminophen is Tylenol. Taking narcotics can also cause ALT levels to be high. Narcotics are types of substances or drugs that relieve pain and cause feelings of pleasure. Medications that can cause liver damage may also lead to raised ALT levels. Such medications include heparin (a blood thinning medication), tetracycline (a type of medication that fights infections), and metyhldpopa (a medication used to treat high blood pressure).

Severe burns, shock, and polymyositis can cause high ALT levels. Polymyositis is an inflammation of many muscles, and is usually accompanied by deformity, abnormal fluid buildup in tissues, difficulty sleeping, tension, sweating, and pain. Dermatomyositis, which a disease that causes destruction of muscle tissue, can also raise ALT levels. Rapid growth can cause mildly increased ALT levels, especially in pregnant women and young children. High ALT levels can be caused by seizures (sudden, violent, involuntary muscle movements). A type of infectious virus known as Epstein-Barr virus can also cause high levels of ALT. "

Medicare, food stamps should be options for him. Also, call your local United Way and ask what services are available in his area that could assist him. The Salvation Army is also a good resource to call.

This one isn't very nice and I don't say it often but I certainly think it a lot....

When people say "Well, you look fine" or "Well, you look good" in response to my saying I FEEL bad I, on occasion have said, "Yeah, well you LOOK smart"

I'm assuming what you describe is chronic fatigue. But, we've talked on this board before about how sometimes it can be hard to tell which is cause and which is effect. I don't understand why those of us with Dysautonomia's have such horrible fatigue but it seems to go with the territory.

I too have trouble concentrating and getting mentally foggy and tired. Some days I can work on something for an hour or two and other days I can't focus for more than 5-10 minutes. I am not able to predict what days will be good and which ones will not be and that can be frustrating too. Some days I can get things done but for example, something that used to take me 10 minutes may very well take me an hour. The strange thing about that is I can tell you it took me an hr instead of 10 minutes but I can't explain why. I can only tell you that I spent the whole hour trying to get a particular task done. It's like everything is in slow motion for me sometimes. It can be a weird sensation and I have no explanation for it.

Personally, I feel I would have more patience with it if I UNDERSTOOD why this happens.

So...I don't have any great suggestions for you but wanted you to know you aren't alone in this!!

It helps me to have the head of my bed raised but I didn't notice it right away; it was a gradual improvement. I still have horrible POTS spells at times but I do notice a difference for the better.

The other bonus for me is that it was an instant "prop up" to watch tv more easily when I'm not able to sleep!

Welcome!

I hope you find some answers soon!!

Others have given you good advice already so I won't repeat that but I will say that I too have high BP and the extra sodium has HELPED me a lot!! We were recently talking about this on another thread here about how it may sound counterintuitive at first but really the high BP MAY be a sign of your body overcompensating so when you give it more of what it needs it settles down.

I think it's worth trying the increase in sodium to see if it helps. It took about 3 weeks for me to see a big difference. You still have to drink a lot of fluids though. It also makes sense to me because I too responded well with IV (except IV access is difficult in me and Cath is not a good option for me since I have a pacemaker) and they do have saline in them so it makes sense to me that for some of us it may be having the combo of fluids and salt that really help.

I get these symptoms too and my sugar is normal when it happens. What you describe is all normal for POTS as well as it could be symptoms of something else. It's a process of elimination to try to figure it out.

When I got the flu in December the one thing that seemed to help on many levels was sipping on chicken broth. It's high in sodium and it's liquid so that will help with POTS and it was soothing to my throat and it was the only thing I could keep down so I managed to keep some protein in me this way as well.

Hope you feel MUCH MUCH better soon.

I'm glad you were able to stay with this child at a time when he probably really needed some consistency and stability but I'm so sorry it was at the expense of you missing your appt!!!! What a bummer; especially when you really do need this appt but at least they were able to reschedule you within a reasonable amount of time.

Maybe you can throw a rice pack or some other heat pack of some type on your back and veg out a little this evening with some good company, a favorite tv show or a nice book!!

Yep....me too, in fact you are on my list of people to contact...it's just my energy doesn't hold out long enough for me to stay on top of things. I know you know how that is.

I hope you are okay though. Check in with us when you are up for it!

Julie,

I'm so sorry you are feeling so rotten!!!! I don't have any great words of wisdom but I would think if the bronchitis is bacterial infection you would have to have an antibiodic...I certainly don't know that for sure though.

Hang in there and I'm sending you a big ((((HUG)))

I can relate to your pain issues but I haven't found anything that helps me either. I just keep trying to do gentle stretching and isometric. Have they ruled out connective tissue disorders in your case?

I'm sorry for your frustrations; I really do understand them.

My experience is that most Dr's don't know about POTS and most of them do not know how to tell the difference between NCS and POTS. They certainly don't know how to treat them both!!!

THe only thing I know to tell you is to keep doing your own research and maybe this Dr will be willing to educate himself? Maybe you can provide him some literature on the topics??

I'm sorry you (and the rest of us for that matter) have to go through this!

Morgan,

You may want to check the Disinissues site; it was recently discussed on there that if you check "worse" it can flag your file for the long form to be sent out and a longer investigation.

Thanks for asking Dr. Raj this question! I'm glad he was able to respond (and so quickly too!)

I actually have a high bp and it was recommended I increase salt and fluids and I can tell you it helped a lot. I'm assuming for the same reasons momdi mentions and it was Vanderbilt that gave me my instructions so it looks like on this particular component Dr. Grubb is the "odd man out" so to speak.

I'm so glad we have a handful of Dr's who continue to do their best trying to sort these issues out. I think it will be years before they have clear, confident answers for us. I was diagnosed about 10 years ago (When NCS was developed as a diagnosis) and it is AMAZING how far things have come in that amount of time and yet there are still more questions than answers.

Check this site out http://www.cafepress.com/idastuff/

I found some books, T-shirts etc that helped me through some of what you are going through. I also found the T-shirts a comforting yet gentle way to remind those around me that I am sick even though I may look "fine".

It is natural to want to do things that your friends are doing and it is very hard when you are so young to have your friends understand. I think the older we get the closer we can come to understanding (although still not close enough unless you have experienced a long term illness of some kind).

I'm not feeling well myself at the moment so I will keep this short but my wish for you is that you plan a "just for me" evening and try to do what you need to do and do some things that will re-energize you. Pamper yourself in whatever way(s) you can that will help you feel better and don't feel guilty about it!!!!!

A tilt table test, although helpful, does not make for a conclusive diagnosis in and of itself. There are both LOTS of false positives and false negatives with the TTT. There are many reasons for this including (but not limited to) how the test is done, if medications were used or if you were on meds at the time of the test or did not allow enough time for them to clear your system, if the Dr knows truly how to interpret the results etc.

The TTT is just one of several, along with a record of symptoms that should be kept that will really help confirm a diagnosis.

Hang in there and I do hope you get some answers soon.

Morgan,

Just wanted to say that I do understand what you mean when you talk about the difficulty of using the chair.

The day my chair got delivered I thought I would be excited because I was so tired of crawling around the floor trying not to pass out and not being able to do things for myself on really bad days but instead, when it arrived I broke down in tears and cried for about an hour (thankfully, after the guy demonstrated everything and left!). For me, it was a reality check. On the one hand I knew I needed it, on the other hand I desperately wanted NOT to need it and staring at it right in front of me made me face the reality a bit more harshly. At first I would look at it and think, "I'm not that sick" and then I would laugh at myself because I had been crawling around on my floor trying to function (obviously not the activity of a healthy person unless your 7 months old!!).

The other difficulty I had was I would not allow myself to get "attached" or "used to it" until I had the EOB in my hand showing insurance had paid their part. Although, I did not realize I was doing this until the day I got the EOB. I was afraid the company would have to come take it if insurance did not pay and i didn't want to be hurt, yet again, so I held back from using it. Once insurance paid though I started using it more and it has made a big difference for me. I can function much better on my own and even on my really bad days I can usually manage by myself now.

It's also true that other people in the world sometimes treat you different when you are in a chair. It's been an eye opening experience for me. Some people offer assistance to you because they assume you need it. Some people will not look at you because they don't feel comfortable. Try to remember that how people treat you when you are out and about is largely a reflection of THEIR beliefs and comfort level. The more confident you are in your chair, the more eye contact and casual conversation you make to others the more comfortable everyone will be. BE YOURSELF, that will always shine through and that's all that matters.

Nina, this is a bit 'unconventional' but I thought I'd share it on the off chance this would help you or anyone else. I've tried several of the sleep meds, as well as herbs and I've not had success with anything (either because of side effects or they weren't effective for me).

At one time I would take 1/2 of the smallest dose of Klonopin and that did work well. I didn't have anxiety but it made me sleepy and it also calmed my stomach.

The other thing that worked for me for both HR, BP and sleep issues was a small dose of Clonodine. It is used in POTS for hr and bp but it does have the side effect of making people sleepy. For me, it knocked me out.

The other thing I used at one time on an occasional basis (ie...if I was needing sleep and had gone several nights without sleeping well) was Vistaril. It is an antihistamine (I think); I believe it's in the same family as benadryl and it helped with both my allergies and made me sleepy. Since I only used it occasionally it worked to help me sleep if I needed the 'boost'

Kimberly,

If you haven't yet had a chance take a look at this post and follow the link to the article written by Dr. Grubb.

http://dinet.ipbhost.com/index.php?showtopic=4919

Maybe you could share this with your family and friends and it would help them understand (it specifically mentions how we are often misdiagnosed as having psychiatric or anxiety disorders).

While there is some overlap in symptoms and you can have both of these disorders at the same time they are clearly very different and to the appropriate trained eye it's not hard to distinguish the two.

Hang in there and know you aren't alone. I think most of us on this site do understand!

It can take a little getting used to. I like mine a lot especially because it helps and it requires no medication!!

Do you have insurance? If so, go to their website--they will often have a "Find a Dr" site and then find this Dr. on their list and see if they have a "rate this Dr/ or service" and fill it out.

Also, I would write a letter to both the Dr and your insurance carrier about your experience.