taylortotmom

Have you considered writing a letter to his superior or even the newspaper as a gratitude for his professionalism? When medical professionals stink we want it known- but we also need to acknowledge when they are awesome! Carmen

Have you ever tried iv fluids as a treatment? Out of all the different solutions my doctor and I have tried this has been the biggest help. You stated that you have syncope and presyncope and low blood pressure. The fluids will raise your blood pressure and help with hydration which can be directly related to those "passing out" episodes. Many doctors aren't aware of how crucial this is for us or what a relatively easy "fix" it is. Many of us are trying different meds after meds with no improvement but show considrable improvement after receiving iv fluids. Keep in mind this is not "the answer" by any means but it is "an answer" for sure. There have been many discussions about this on this forum so you might want to do a search. Good luck and don't give up even if your doctor feels at a loss. If he is your "Pots" doctor and hasn't considered iv treatment, I would strongly encourage finding another doctor. Many autonomic specialists are prescribing fluids more and more. Good luck! Carmen

I do not know where you live but if possible have your syncope investigated by either a cardiologist or neurologist. As Ernie stated , the tilt table test is the gold standard for diagnosing dysautonomias but it is not all inclusive (or exclusive for that matter). You can read through the posts on this forum (Mighty Mouse had a recent one) regarding how long it can take to be diagnosed. I hope you are somewhere with knowledgeable doctors but they are the exception and not the norm in regards to dysautonomias. I was fortunate to live in Alabama at the onset of my illness. I have a phenomenal cardiologist who figured out "the deal" pretty soon after seeing me. So, I wish you well but have to warn you you might have a long, hard road ahead. However, this is a great forum for support. Carmen

Bless your heart! At least it happened at the doctors office so there was no way anyone could say you were faking! I hope you rest this weekend and please keep us posted. That had to be terrifying for you and everyone around you. Any idea why your potassium so low (Florinef?). Carmen

After a date of disbailty has been determined- there is a five-six month waiting period before benefits kick in. My date of disability was 01-01-03. So my benefits were paid back from 06-01-03. Then, there is a two year period of receiving disability payments before you are eligible for Medicare. Thus, I became eligible for Medicare June 1, 2005. I hope this helps you understand this very complicated and frustrating process. Carmen

The rules are different for younger workers who become disabled. You may indeed qualify for SSDI, especially since you state you worked full-time for 1 1/2 years and some during high school. Younger workers do not always have to have as many work credits as older workers so definitely talk to an attorney who specializes in disability law. Another thing is young workers can sometimes by-pass a lot of the waiting and get records based decisions, especially, if their condition is worsening. It is worth your time and effort to find someone who can help you. Good luck! Carmen

Steph did a great job of explaining the process. The main thing is to understand there are two seperate programs: SSI (Supplemental Security Income)and SSDI (Social Security Disability Insurance). SSI is for low income applicants who do not have enough work credits to qualify for SSDI. There are extreme financial qualifications for this (little or no savings, cars and other valuables can count against you as well). However, with SSDI you can have any amount of assets as long as you have the work credits. If you have worked, you should recived a Soc. Sec. statement every year that tells you how many credits you have and how much SSDI you would qualify for if you became disabled. You can request a copy of this from Soc. Sec. if you have not received one. I know it is confusing but these two programs are completely different. If you get SSI- you will get MediCAID, if you get SSDI, you will get MediCARE. Again, get an attorney. Find one that charges "no fee unless you win". These attornies usually only take cases they feel confident of winning AND they do all the work. Soc. Sec. will pay them out of your back pay once a ruling and award has been made. You may have to pay your attornies back for the records they obtained. This cost me around $70.00 and my attorney fee was $5300. However, after all was said and done I recieved $12,000 back pay, monthly payments of $631 (3600 back-pay for my kids, $200 a month for the children) and Medicare. I got an attorney after I was initially turned down and had filed an appeal. I should have done that a lot sooner. The judge approved my case withiin ten minutes of seeing me at the hearing. Hope this helps! Carmen

Invisible disabilities are hard to deal with aren't they? Sometimes I envy people who have blantantly obvious disabilities for the very reason you mentioned. When you are young and healthy looking people just don't have a clue! Carmen

Congratulations on getting through your first day! I'll tell you what I learned during my grad school experience (I was VERY sick)- Getting there is 80% of it all. If you can just get to your classes- everything else will fall into place. Good luck and have fun! Carmen

All this college talk between you and Sunfish is making me so nostalgic! Add to it that I now live in Tallahassee, FL (FSU!)- I can smell the football in the air! Anyway, it sounds like you are on your way to having a good college experience. That first year is hard for everyone- especially, if you are living away from home AND have significant health issues. Take care of yourself and rest well, eat well, and take it easy on the partying. College life is not the healthiest of lifestyles! I wish you the best! Carmen

Many patients with dysautonomia are put on deconditioning programs. My cardiologist threatened to put in cardiac rehab a few years back. With dysautonomias your body gets "conditioned" to being inactive. How can you exercise when you faint when you're upright? Well, the school of thought about reconditioning is that you can train your body to handle more and more over time. This for us is very different from "exercise" programs of healthy people. We have to start small- very small and slow and under the care of a medical professional. We don't hop up and walk three miles our first day in training. We might sit up and do some easy stretches for ten minutes a day for the first week or two. So, when your neurologist is saying an exercise program he is probably referring to a deconditioning program which should be monitored by someone very familiar with the physical limitations of dysautonomias. Carmen

I just loosely checked the Medicare site and the new prescription program starts Jan. 1, 2006 with applications being filed starting Nov. 15 of this year. There is currently some programs which help for prescription costs- you can read more about this on the Medicare site. Another option might be Medicaid if you qualify. Depending on what state you live in Medicaid might cover prescription costs (it varies state to state). Your home health provider can help steer you in the right direction regarding getting help with the saline costs until the Medicare prescription program kicks in during January. Good luck and let me know what you find out! Carmen

Medicare has started (or is the process of starting) a prescription drug benefit. Go to the Medicare website and see if you qualify for any of the programs currently available. My Medicare kicked in June 1 and I am going to go over the details of the new prescription benefit with a fine tooth comb when I feel better. I have been knocked down the past couple of days. But, see what you can find out and I will do the same when I feel more coherent. Take care and don't give up. Carmen

Thanks for checking in- we've been worried about you! Carmen

I have tried various beta blockers, SSRI's, and florinef. Without a doubt, the thing that has been most beneficial for me has been my port-a-cath and daily iv treatments of lactated ringers (1-2 liters daily). This is what has improved my quality of life more than anything else without question. It is an extreme treatment but what a difference it has made in my life!! (I have some degree of normalcy and have some "good" hours which are becoming more frequent.) In addition, when I feel bad I have the control to treat it at home instead of going to the hospital or trying to explain to someone who has no clue why I'm on the floor. Carmen

Those of us with mitral valve prolapse have to take antibiotics prior to dental work including cleanings. Based on my history I have to take a megadose ( I have a heart cath). There is definitely a link to the bacteria in your mouth and infections. My dental hygenist explained how important it is for those of us with heart problems to take meticulous care of our gums. All that bad bacteria (gingivitis, etc.) goes into your bloodstream and onto your heart. I thought of my teeth as being my least significant issue until she emphasized this to me. Carmen

I think that particular type of headache is referred to as a cluster headache. It is not uncommon for strange headaches to prelude, accompany, or follow a bad virus. If you still have the headache or it gets more severe in a few days, put a call into a nurse to see whether you need to be seen. A word of warning- doctors like to attribute headaches to stress- especially, those that don't get better with medicine. Carmen

I was on Elevil (sp?) briefly and actually had more "depression" sxs than off it- so my doctor took me off. I later tried Celexa and it was okay. But, yes, I know what you mean. Elevil made me feel like crawling the walls (wound up, sad, etc.). Carmen

I agree with the elevating your head suggestion- it helps on many levels (decreasing reflux for one thing). Try laying on your left side. This has to do with compresseing your vagas nerve which can help with the dizziness and vertigo. Also cold water to sip with peppermint candy in your mouth works for me. It makes no sense but it works! Here's to happier nights! Carmen

Our moderators simply do not have the time to do a chat room - and understandably so. This was discussed in detail a couple of months ago. You might want to look back over the forum rules- I think Michelle put something on there. (I just woke up and have not had my coffee- major brain fog!). I think some of the forum members communicate in other capacities such as e-mail, phone calls, etc. There has definitely been interest in a chat room for Dinet but it is a very timeconsuming undertaking. Hope someone else can help you find you are looking for. Carmen PS. Oh yes, I remember- it was discussed in the "rebuilding our community" post-I think that was back in June

Hi, Stacey. I met my husband on the first day of my last semester or college. I was majoring in psychology and had my mind and heart set on a PhD. I was going to be licensed and go into private practice. I walked four miles almost every day and had a supermodel's figure. Jason and I had so much in common as far as values. Neither of us wanted our children to be raised by other people and Jason wanted to be a Mr. Mom. Honestly, that was his mission back then. Go forward eight years. I am a stay at home mom and have been for five years. 50% because of choice and 50% because I am totally disabled. No PHD but I did get my Master's. For the past five years I had a lot of really scary things going on medically so my Master's degree was something I wanted for myself- to prove to myself that I could do it even though I was SO, SO sick. Jason has been our sole financial provider and we have moved several times in pursuit of his career. Our life is nothing at all like we expected it to be.... except for the fact of how much we truly love each other. Boy has our marriage been strained but we have prevailed and we are far stronger than I ever thought possible. I have loved being at home with my babies (they both are school age now) and have found many outlets for my degree even though I don't work professionally. I don't have that supermodel's body anymore. I had a hysterectomy last summer and have a post-menuposal pooch. Because I can't work out like I use to , it is probably here for good. No life did not turn out the way I planned. We have had our seven years of "in sickness and for poorer" and look forward to the days of health and wealth. But, we are so lucky. We are still married and most of our friends have divorced. We absolutely know what committment means. Commitment to each other and the marriage. Based on what you said it sounds like your husband and you have had similiar experiences. Can you honestly say only two months of your marriage were good? Maybe they were ideal (of course, almost every marriage's first two months are surreal- then, reality hits!) If you can say that- I am so sorry. But yes, I do know what it feels like to realize life dealt you a hand you never meant to play. But sometimes the worst cards end up winning the game. Take care- I'm a Florida girl now, too! Carmen

I don't know if Florinef has been linked to the inability to sleep but my cardio warns me every time he prescribes it that it might give me nightmares or really vivid dreams. He has patients describe this so it is not farfetched to say the increase might cause insomnia. However, another possibility in regards to the inability to sleep is depression. Depression oftentimes presents as anxiety sxs which includes the inability to sleep. That's just one possibility. I know that I experienced this personally a few years ago. I didn't really have any classic depression signs but was "strung out" so I was not eating or sleeping normally. Most likely due to the fact I was trying to work fulltime (after being home for a few years) take care of my two children AND had totally unexplainable and scary med probs. No wonder I was stressed! I was a therapist at the time and it about killed me to admit that I needed some drug intervention. I went on Celexa for about six months and it helped. Carmen

Thank you, Melissa- it took TWO YEARS but it was approved within ten minutes of actually going before a judge. Carmen

Hey, read my recent post about ventricle enlargement and Morgan's reply. Carmen

Dehydration is hugely related to syncopal episodes so the link between craving water/salt and passing out is legitimate. I do 1-2 liters of iv fluids (chock full of sodium!) for this very reason. What is weird is I never realized how dehydrated I stay until I started doing this tx. I can really tell when I am not up on my fluids. I really think more of us dysautonomiacs need this type of tx. An irony is I just received a phone call from my insurance company while typing this and had to explain to the nurse what dysautonomia is and why I need this fluid! She was nice and interested in learning more about our plight. Talk about your weird timing! Carmen