futurehope

I've been reading through this forum for awhile and noticed people's suggestions for increasing salt intake including sport's drinks, tomato juice, soups, etc. Many of the ways I've seen mentioned here did not work for me because I also happen to have GERD (esophageal reflux) and a lot of the suggestions made the GERD worse. Also, the sports drinks tended to do the same. Well, I've been having a particularly bad bout of "irritated esophagus" and in addition to my usual meds, Nexium and Zantac, I've been swallowing 1/2 tsp Baking soda in 1/2 glass water (the dose is on the package) and it took away the heartburn immediately. What I didn't realize at the time was that my systolic (higher number of BP I think?) has been getting higher, more in the normal range now. I attribute that to the increased salt intake from the baking soda. And the baking soda is cheap, easy to take, readily available and it didn't hurt my stomach! I hope I haven't been doing any harm, but I can't see why being as I know how much salt many of you ingest on purpose every day to help increase blood volume. Just thought I'd share my new find.

This past year has definitely been a roller coaster ride for me. There was even one occasion that I was so discouraged that I called Social Security (my prior employer) and told them I wanted to come back to work (even though I knew I couldn't). I was getting pretty desperate that no one was believing how bad off I was. Before I made it back to work, I had to back track and tell Social Security that I was too ill to perform my job and I permanently resigned. What a down day that was! But I always kept all you people in mind whenever the going got too tough. I realized I was on a mission to educate the SSDI folks about POTS people and I wasn't about to let up no matter what happened in my particular case. And I still feel that way. Some of us can work, but the ones who cannot deserve to be heard and respected and believed and compensated for with SSDI especially if they have put the years in in the work force. We are a force and together we can make a difference! The awarding of SSDI will not discourage me from pursuing a cause and fix for my condition and I am a firm believer that there is HOPE for me out there. This forum is invaluable for tips and insights into help with this condition. But whenever you're dealing with the autonomic nervous system, there are just so many different things that may not work right, so what may help one person, may make the next person real sick. But there are answers out there. And I'll find them, God willing.

Tinksinflight, Have you seen Dr. Khurana recently and has HE given you a script for Adderall? Dr. K is my doctor and I wouldn't even think of calling him and asking for it over the phone. I will be seeing him in September and I will ask then. Besides, after the last post, the substance cannot be called in anyway.

Great idea! I know two hairdressers at my church that may oblige.

Jessica, Best wishes to you and your household.

Danelle, I was denied 2 times. I am all the way to the Administrative Law Judge Hearing level which is the third level. I went to a lawyer immediately after my first denial. I would recommend doing that. I live in Maryland. I do not know yet on what basis the ALJ decided favorably, but it will be in the report I get in 30 - 60 days. My lawyer sent in forms with my signature on them requesting medical records. I was ALWAYS in a state of insecurity because my neurologist would not fill in a "functional capacity form" detailing what I could and could not do. Apparently, the lawyer thought the filled in FC form would really help me get the SSDI, but my neurologist always used the excuse of, "I see you here for 40 minutes. I do not know how you would do for 6 hours on a job. I can only speak for the 40 minutes I see you." Of course, his notes show that after sitting in his waiting area, my HR and BP were already up, and I always felt bad after any sitting or standing. I do not know if this helped or not, but I used to work for SS and they would be very accomodating to a disability if you felt you could still perform. I couldn't really get my former bosses to write anything either, (about things like I couldn't sit, stand, and I had to go to the nurses station cause I thought I'd pass out, etc, etc) but maybe the SSDI people spoke by phone to some people like my neurologist and former bosses. Also, I collected write-ups from my pastor and my mother detailing how I used to be and what I am capable of now (which is next to nothing). Also, the pastor said how I tried to go back and work for him and was too ill to do it. I don't know if that held any weight or not. I'll see when I get the paperwork. But there is hope for POTS people. I'm so glad about that. I always felt that I would go all the way to whatever it took and stand and look a judge in the eye so that I could go down on record as saying I'm disabled and I can't work since that's the truth. Even if they denied me, I wanted there to be a record so they would recognize all the other POTS people that apply and realize that they have a problem. I'm rooting for you! Don't give up. P.S. When you are filling in all the forms, you want to emphasize the difficulty of doing the things you do, not how well you can do other things. And never lie.

I just heard from my lawyer's office. I was approved for Social Security disability without having to go to hearing. (I don't know how I would have survived that anyway, being as I cannot sit for long.) I'm backdated to April, 2003. I cannot believe it, but I got it and the judge gave it to me without the hearing. He just reviewed my data. Yeah! This is too good. (I had begun applying last June 2003, so it took a little over a year.)

I think it's cool that you can have short hair. My problem is, it's such a "crisis" for me to go to the hairdresser to get it cut (I feel bad when I'm sitting still, dizzy, weird, insecure), that I avoid the hairdresser unless I'm having a particularly good day and I can't stand the length of my hair any more. This turns out to be about every 6 months. I've heard that if I get my hair cut short, I might have to show up every six weeks, and there's no way I would do that. I would go into "crisis" mode at just the thought of "having" to go. So my hair is quite long, and I wear it in a bun on most days, and I curl it once on Sundays and may wear it pulled "half" back or in a nice pony tail. But, enjoy your new hairstyle. I'm sure it's a lot easier.

Lorrell, Does your insurance cover the daily B-12 shots you take? Under what diagnosis? Thanks.

I beg to differ on "doctors are not interested. There's no money in it." The current experts on dysautonomia are SWAMPED with patients. They can't even handle the load. I've had a doctor at Hopkins and in D.C. turn me away. If a physician is wise enough to notice the need out there, there is much money to be made. My current endocrinologist is interested in helping POTS patients, and I think he is very wise. (Now, maybe, all physicians nowadays, have problems making ends meet due to high overhead, and that's why they're leaving the profession. That's another issue. ) Also, Dr. Khurana (my neurologist) has told me that the equipment used to test us is not cheap and maybe they do not have the money to invest in it for their own practice, BUT, if some doctor became affiliated with a "Dysautonomia Center" that included a multi-discipline approach, I think the patients would start coming. There is a need out there, and the wise physician would recognize the potential. And he would certainly gain notoriety from this forum and well as other internet sites. Maybe we need to start educating the MEDICAL SCHOOLS in what the need is so they would start investing their instruction time on dysautonomia?

I've come up with a new hypothesis and wanted to see if anyone here has severe GERD, bad enough to have been on either Nexium or Prilosec long-term like I have been? I am beginning to wonder about the body's ability to utilize B-12 and who knows what else when one is on these meds long term (since they cut stomach acid which is needed for helping us utilize necessary nutrients)? My hypothesis is, long term usage of these medications may have cut my stomach acid enough to prevent absorption of vital nutrients. Hence, POTS and other dysautonomias could result because of the nutritional deficit.

The link is: http://www.mayo.edu/proceedings/2002/jun/7706a4.pdf

Wife, I was diagnosed by a TTT at my neurologist's office and by a TTT at the National Institutes of Health in Bethesda, MD (in one of their studies). The doctor there is a neuro-cardiologist. I have not been through their FULL workup, though. I'm with you (I mean I agree with you). My symptoms, even though they are incapacitating for me are no where near as bad as other people's symptoms. I, myself, am on a one-woman journey to find something ELSE that is causing the POTS symptoms. I just had MUCH bloodwork drawn to be tested for autoimmune disorders, including a test done at Mayo Clinic that tests for ganglionic acetylcholine receptor antibodes (autoimmune against your own nerves, I think). My current endocrinologist is very interested in working with POTS patients and has had success with giving supplemental cortisol to two POTS patients. I, too, am now taking supplemental cortisol and he has just increased my synthroid (thyroid hormone). I have ALWAYS thought that in my particular case there is an endocrine connection. The jury is still out on the above, since I'm still adjusting to the hydrocortisone and to the increased synthroid. Anyway, I'm NOT giving up on finding a doctor who can help, since my gut instinct is that there IS something they can do to help. The right doctor needs to find it. Anyway, I'm pleased with my doctors right now. They're responding the way I want them to. I don't want them to give up looking for a cause (the endo just found out via a Insulin Tolerance Test that I respond from my adrenals in a SUBnormal fashion when under stress - that's why I was given the hydrocortisone) . And I don't want to stop at anything to find a way to help me. So, they may not be helping with the disability (and I'm broke), but they are helping with the POTS. I'm grateful for that. I really appreciate your response. Thanks a lot.

My neurologist is the one that is familiar with POTS and with my case and he diagnosed me. I do not have fainting. I just "feel bad" when vertical. I can still sit, my feet are on the floor, my hips are flexed, I look like I'm sitting. I just feel bad. The feeling gets worse the longer I sit and then it becomes difficult to think because the headache is so bad. My heartrate goes up to about 116 or so, not as high as some people on this forum. Yes, I have the article on quality of life. I gave it to my lawyer. My doctor does not like doing any paperwork - and I guess he wants no part of it. His excuse? "I see you here for 20 - 30 minutes. I have no proof that you can't be at a desk for 6 hours a day doing a job, do I? Your employer would be in a better position than I am to tell them of your inability to work." He is the only doctor in Maryland that really understands. Thanks for your reply. After looking through the codes, I realize I have no hope whatsoever. I do not have the money to get neuropsych testing to prove that I'm too sick to work when vertical. That costs in the thousands, and I'm pinching pennies as it is.

Wifeofpotsman, I would love to know what state you live in and the name of the doctor that wrote up a functional capacity questionnaire detailing how and why your husband was unable to work. Thanks. That's my biggest roadblock, getting a physician to fill in the FC form. P.S. I looked up those impairments and they involve respiratory and heart arrythmias. I do not have either of those. What arrythmias and respiratory problems does your husband have, may I ask? P.P.S. My physician asks me every visit "How long can I sit?" Well, that question doesn't really mean anything to me or say anything about my condition. The reason is, I am ABLE to sit. If you look at me, my hips are flexed, my feet are on the floor and I'm sitting. It would be more valid if he asked me, "How long can you sit before you become incapable of thinking or doing any tasks because you feel so bad that you can't think?" I think I'll tell my doctor next time I see him what I just told you.

Veryblue, You need to stop connecting "There is something wrong with me" to "I am dying". There is a difference. You can have things wrong with you and you can find doctors that can help, or not. But, you need to stop equating "something isn't right with me" to "I'm dying." It doesn't sound like anyone has even diagnosed you with POTS or any dysautonomia for that matter. My blood pressure goes up when vertical and nobody ever told me about brain stem dyregulation or dying. It also sounds to me, despite the BP fluctuations you are experiencing, that you are leading a life a lot more "normal" than others on this forum. The other thing we all need to realize is that nobody guaranteed us a perfectly working body when we were born . Most people have SOMETHING that doesn't work quite right. If you are not experiencing any symptoms, look at the bright side. You ARE able to live your life right now. You haven't died yet. It is not the end of your life if you have something wrong with you. I don't mean to equate you to anyone, but look at Mattie Stepanek the 13 year old who just died of MS but led an inspiring life. And look at Christopher Reeves. Would you have told these people that their lives were not worth living or that their lives were over? You are you no matter what your body is or is not capable of doing. Channel your anxiety into finding a doctor who specializes in dysautonomia. And, of course, they don't have all the answers either. Your life may just have taken an unexpected turn and you may now need to readjust, but your life is NOT over.

If you don't mind my asking, how did you find out about the rise in your BP upon standing if you had no symptoms to clue you in? Usually people do not take their blood pressures. You seem really upset about something and I'm still trying to figure out what you are upset about?

I do or should I say did. I'm not sure it goes up as much as it used to. Have you had your thyroid hormone levels checked? Mine was going up more then than it is now. My thyroid hormone levels used to be a bit high. And Calypso is correct, if there is nothing else (like elevated hormones) causing the rise, then your ANS may be having trouble adjusting to the change in posture. Dr. Goldstein at NIH did a TTT on me and said he suspected that the longer I stood up, the higher my BP and or HR might go. So, I'm not a fainter, just a "I feel rotten when vertical" person. Do you feel bad when you're vertical?

I'm still not clear on what you think the problem is? Are you having a problem other then your numbers? Are you feeling anything? Do you think the numbers are too low, the BP and HR when supine? How do you feel?

Are you saying that your primary symptom is low blood pressure lying down as well as sitting or standing?

It's interesting to me that the people who knew me "before" and "after" at my church find it hard to believe as well. They saw me before and now know that I can't hardly do anything. But, I do think that the suggestion to help others does get your mind off yourself. One thing I do, if I know I can be a blessing to someone else but don't know HOW I can do it because I feel so bad, I ask GOD and He helps me through it if He indeed wants me to be of assistance. Also, sometimes if I can just make a phone call to someone else, it lifts their spirits. I also will tell people I will pray for them, and then I do it. Another idea is to send an encouraging card or word in the mail or email. Or if you have a craft that you are able to do, such as knitting or crocheting or whatever you can do, you can make something and give the item as a gift. There is a tendancy with this ailment to get stuck in the "I used to be able to" mode, that's for sure. And, that's a place you don't want to be. It serves absolutely NO purpose at all to think of what you used to be able to do, but you can't do now. It takes some effort to get out of the "poor me" mode. I know first hand. It's not easy. But, it's a necessity if you want to keep your sanity. If it helps, I understand all the losses we're dealing with. I just try my darndest to readjust.

Actually, now that you brought up the subject, the doctor who researches POTS at National Institutes of Health in Bethesda, Maryland is a NEURO-CARDIOLOGIST (both). Anyhow, it's my gut feeling that the most important thing is that you have a doctor that is familiar as he can be (being as there is no magic cure) and willing to send you elsewhere when he feels someone else might be of benefit. You, as a patient, have to ask the questions and suggest referrels if necessary. In my case, anyway, POTS affects so many different body systems that there really can be no "POTS doctor" who understands them all. I cannot believe that any medical school gives any one doctor enough information about ALL the processes involved. On that note, Dr. Goldstein at NIH seems to have quite a bit of training, but, HE DOESN'T treat POTS, he only researches and gives suggestions (as I understand it).

Though I have often mentioned extreme fatigue as one symptom, my neurologist has only labeled me with POTS. I am currently seeing an endocrinologist who is working with my neurologist to address the fatigue. So far, the hydrocortisone the endo has me on has helped tremendously with the fatigue. But, it's only been 2 days. We'll see.

Migraine, It sounds to me like you may be helped by seeing an endocrinologist. They specialize in endocrine disorders that are associated with your endocrine glands and the hormones they produce. There is SO much to know about our bodies, so for instance, my ENDOCRINE doctor specializes in pituitary disorders. There may be someone else who is better at pancreatic disorders which you may be experiencing. Obviously, I do not know the cause of your problems but it SO important to keep searching. There IS an answer somewhere as to the cause of your health issues. They may be able to treat you. I, for one, have not heard enough on this board about POTS patients going to endocrinologists to be evaluated. Those hormones in our bodies have a very potent effect on everything. In my case, I think my adrenals responded okay when I was given a synthetic form of ACTH (a pituitary hormone) to stimulate them, BUT, it is possible that MY OWN pituitary does not stimulate my adrenals as needed. That's what I'm suspecting in my case. And if so, my diagnosis would be hypopituitarism. See: http://www.pituitary.com/disorders/hypopituitarism.php

Actually, the endocrine connection is way more complicated than I was describing, and I hope everyone realizes that whatever I've said here cannot substitute for a physician who specializes in endocrine/pituitary malfunctions.