Poohbear

Julie, I will be thinking about you...both when you go to Milwaukee and on the 29th when you have this device implanted. They can do it with local so ask the Dr's if they are willing to. Sometimes they don't like to because lots of people tend to be queasy and fidgety so it's easier for the DR. if you are out. Take care and keep us posted!

I agree that it's something you definitely need to have checked out. I can also say though that I went through about a six month period where my vision quickly and drastically changed and I had pain like you are describing and it did not go away. For me, we eventually figured out it was migraine aura related even though most of the time I wasn't getting the headaches. For me the problem is largely migraine although it's not a typical migraine pattern. It may help you to keep in mind that it's the brain that sends messages to your eyes to get them to focus and work properly and since our brains don't work right sometimes the eyes can be impacted in a major way. I've had to get two prescriptions for my glasses and I wear whichever works best on a given day. It's unbelievable to most Dr's (especially Opthomologist and Optometrist because most of them have NO clue about Dysautonomias.) My prescriptions are VERY different from each other. In terms of your son, try not to feel bad about asking him to repeat the number. Try to be gentle and calm when you talk to him about it so you can hopefully minimize any fear he may feel but he's old enough to talk to him about it and rehearse what to do. It's a good thing and teach him how to call 911 too because you never know when he may need to call for you, himself or anyone else. Hope you get some help and answers with the vision problems

Roselover, Thanks for your kind words of encouragement! I'm glad you've had a poohbear throughout your childhood! I love piglet too...I really love all the Pooh characters. Nina, Because I am under the age of 65 there are virtually no companies out there that will write a supplemental medicare policy for me. I only found one company that will even consider writing a supplemental policy and they said that because I have a pacemaker and because I have been in the emergency room so many times they won't even take an application. He said most likely I won't find a policy because of the pacemaker (at least until I'm 65 or older) but if I do find a company, I have to stay completely away from hospital or emergency room for at least one year and I certainly have not been able to do that. I stay in touch with the States Dept of Insurance; they will counsel me and advise me if any company decides to write a supplemental policy for those disabled under 65. I may have one option open up for me when I move as long as I stay in that county but I don't know if it will be worth it because I think they require you stay in their network and I really have no choice but to stay with the Cardiologist I have.

I'm behind in reading/responding to posts so I apologize this is late but still wanted to acknowledge what you are going through. I am sorry for your loss. Try to be gentle with yourself during this difficult time. Crying definately takes a lot out of you. Be sure to drink extra water; a lot of people don't realize how dehyrated you can get from crying (especially since we tend not to retain fluids well anyway). You may still get a headache from crying but sometimes the extra fluids will greatly reduce the headache. I tend to have an autonomic storm any time I'm in a setting where the emotions are high, whether it's a happy occasion or a sad one. Sometimes it hits me in the middle of things and sometimes it's the next day. I do think sometimes in stressful situations our breathing patterns change and that can induce an episode or make other things set the cycle off.

I hope you get some relief soon. Everyone needs support and a place they can vent so don't feel bad about that or apologize....that's what we are here for. I don't have any great words to offer but just wanted you to know you aren't alone and I do care. Try to keep in mind that you will have better days ahead and just hang in there inbetween now and then!

I can relate to all of this! To add to what Dawg Tired said about "What do you do?" Medical Research You could all also add "I'm a support for people who are dealing with Dysautonomia and related concerns" We may not have "work" but we all have a purpose and meaning in this life (though I know sometimes we don't feel or believe this) and we still do work....it just may be that it's not the kind we financially benefit from. Poohbear Later Alligators After While Crocidiles Hope it's soon Baboons.....just had to say this for Emily!!!

Thanks so much to everyone for your ideas, support and empathy on this issue!!!! The update is #1 I did get to the grocery store last tuesday so I haven't eaten eggs or ramen noodles since . #2 I called many many many services and agencies and churches in the area. Basically I fall through the cracks. I make too much money for most of the assistance programs but yet they won't take into account I have large monthly medical costs. I have to depend on volunteers (which seem very difficult to find) or I have to pay a service to come help me. So.....I think I am going to stop paying my COBRA insurance coverage which will leave me with Medicare only. This is a scary thought however, the premium is $350 a month and they aren't paying much out. Because it's not a Medicare Supplement policy I'm still being billed all of my co-pays and I really can't afford the $350 a month plus with co-pays etc. I'm still being billed over $100 a month. I won't have prescription coverage. Medicare will start offering some coverage in January although from what I've seen most of the meds I would take are not on their approved list and I make too much to qualify for drug assistance. I can certainly appreciate that my situation could be much worse than it is AND at the same time it's frustrating because I do need some assistance and basically I have to be below poverty level to get any of those services but yet, if I get to that point I don't know if I'll ever be able to climb back out of that hole. Anyhow, if I cancel the COBRA then I could hire someone maybe twice a month to assist me in whatever errands I needed help with. Possibly I'm about to go through some major life transitions so in the moment I feel like my life is very chaotic (I've had my house on the market for a while and I will hopefully know by the end of the day if I have a contract on it or not). I just researched all the agencies for the county I live in and if I move it will be in about 30 days and I will have to deal with another county. Meanwhile, I'm exhausted but I can't sleep (my hormones act up with my cycles and I go through about a week where I don't sleep well at night at all no matter how tired I am). Great! Just what I need....to be so fatigued and exhausted when I have to possibly make choices about selling my house and what to do next. Thanks again everyone!! You really make my life better by being there for me and by truly understanding what living with this is like

I hope you are feeling better and have not had to return to the hospital!! Even though I'm not glad to hear you were in the hospital, I am glad to hear you had a good experience. I hope you feel much better soon!!!

Yep, Sounds familiar. I often go through spells like this multiple times every day but my heart rate tends to be in the 130-170 range when I'm like this. I don't have any new knowledge to share with you but I can relate to how frustrating it is and how horrible it makes you feel! I hope you were able to get some rest and are feeling better!

I hope all of you London residents are okay and that your family and friends are also okay!! I've been thinking about everyone. It is such a horrible thing that people want to destroy life like that!

Hi Mary Jo! I have NCS and POTS and have been diagnosed for close to 9-10 years now. Initially medication helped me, then that stopped working and I got worse, that was six years ago and I had to stop working. I was out of work for about 8 months. I was given a pacemaker and improved enough to gradually return to work. Eventually (actually considering everything it was a relatively short period) I was able to return to work at 100% capacity. I still had a lot of fatigue, I still had my struggles and my job schedule was highly flexible which was a must but I managed. I moved and took a better job and worked for nearly 4 years. Again, the type of job I had was highly flexible and I was a representative in one state and my boss was in another. I was a very good, trustworthy employee...I always got my work done but some days I would have to cancel my appts and double book on a day I felt better. I would cram in the paperwork however I could get it done. So I worked really crazy hours and I had no energy for anything else. My life was 100% work; that's all I could do. Then about 20 months ago things got worse and I held on as long as I could to my job but I finally got to where I couldn't do it. It has been very hard for me. I actually loved my job (though at times it was frustrating). I didn't realize how much of my self worth and self esteem were wrapped up into my job until I became unable to work. Though I miss it a lot and cry some days over it I also know I can't work right now. I have good days and I've even had some weeks where I thought "With the increased activity I had this week I think I could try to work again" and then, without fail, I will crash for at least a solid week if not more. So, I know my body can't tolerate it. I do feel guilty and it is stressful for me not to work but I also see where physically I'm slightly improved not trying to work. I guess my advice to you would be if you are really unsure and you think you want to try working contact the local vocational rehab office and see if they are able to assist you. They can help you in various ways and if you try to work and can't, then you will know you did your best. Good luck! You are not alone!

I'm glad you had a good experience and I hope you will recover soon and not have to go through this procedure again!!

Dysautonomia in and of itself is not heart disease. But it is a CONDITION that effects your heart rate and blood pressure. Since the rides can cause changes in either of those you probably shouldn't ride them. I never heard the final result but just recently a child who met the height/weight requirement on one of the space similation/ gravity simulation rides died at Disney. I personally wouldn't risk it. I would feel weak enough just being out in that heat this time of year....wouldn't need anything to add to that! Stick with the Winnie-the-Pooh ride

Ok...bear with me while I have my "Fantasy moment". In my dream world we would all move to one state in one community/county. It could kinda be like a college campus only with houses instead of dorms. We would have the support of each other. Our spouses & family would also have good support. We would be able to take the best of the best Dr's and they would work in this community. Just outside of the campus perimeter there would be Grocery stores, Walmart, a huge mall, restaurants, movies etc. Everything would be within like a 5-10 mile radius. We would have a shuttle bus, wheelchairs...whatever people needed. Then, because we were centrally located we could force the agencies to assist us when we needed and we would qualify as an organization for grant assistance to not only get us the services we need but to teach and educate everyone else and we could raise enough for lots of research money to try to find effective management if not a cure!!!!! Sounds like a great dream to me!! Anyone ready to move to make it happen Ahhhhh....if only it were that easy!!!!!!!!!!!! Thanks for letting me share my dream

I hope you find the right balance for you soon. I too have low progesterone, Hashimotos Thyroid. Are you sure you were reacting to the medication? The symptoms you describe are the ones I get when everytime my thyroid declines in function and is an indication I need more medication. But, I have to go extremely slow adjusting the thyroid med up too because taking too much too quick will also give me the symptoms. If you have a thyroid condition it is dangerous to completely go off the medication..over time you will end up with a much more serious problem. Talk to your Dr about introducing the med more slowly. I've even had to use a compouding pharmacy at times so they can make a lower dose pill than the manufacturers make to build up in my system more slowly. Once I get my body used to the correct thyroid dose I do feel better and my POTS/NCS symptoms become more manageable. Good luck and please do talk to your Dr about the thyroid medication. Also, in case this helps anyone else..when it comes to thyroid hormone the Endocrinologist I saw at Mayo told me not to take Natural Thyroid hormone. He explained that for those with Dysautonomia it was really bad and would be more helpful to stick to the synthetic hormones. I didn't totally believe him at first but after trying both I saw what he was talking about for myself. He had a very good explanation for this and I forgot all of what he said but the bottom line was that in the natural thyroid meds the amount of thyroid medication in each pill is not as consistent and reliable in each pill and thus more likely to make the dysautonomia symptoms more unstable and erradic. In the synthetics, true they are synthetics however, they are much more consistent and stable from pill to pill (since they are synthetic the law requires consistency in each pill). This is only the case with the Thyroid hormone. He agreed with the "female" hormones it was fine to do whatever worked best for me. Hope this helps!!

Thanks for asking Nina! I am really wiped out today so I'll share more later when I'm feeling stronger. To sum it up for now though, I literally spent the entire day yesturday from 8am to 4:30pm, with the exception of one hour, on the phone with various agencies. I did find a shuttle service but the problem with that is they drop you off and they said I would have to wait an hour to an hour and a half to be picked up again. This is a problem because I'm passing out enough that at least right now with the heat, I am not able to manage being alone trying to shop for over an hour. Most agencies were cold and mean and just said they don't have any services for me and didn't know who did. Most of the time if they gave me a referral it was a "bad" one (in terms of they didn't offer what the other agency thought they did). The person who was the most helpful and at least compassionate was a private, home health company. Everyone says it sounds like I need a personal assistant (help run errands, cook, clean etc) but Medicare does not pay for this (they will only pay for skilled nurse and in-home aid (help w/ bathing, dressing, meal). Not ONE agency could tell me how to find a social worker...they just all said they didn't have one. Including the Dept of Family and Children's Services (they actually referred me to Adult PROTECTIVE Services stating that even though I wasn't being abused or neglected I fit their "profile" more closely--Ludicrous if you ask me!!). Not to mention, I called Adult Protective Serices three times and always got their answering machine (glad I didn't need any immediate protection huh?). I'm still searching and am waiting on two people to call me back with the name and phone number of someone who does help people find info/referral sources. The private home health is really what I need but it's $15 an hour with a 4 hour minimum plus I would also have to pay .33 cents a mile (which was also the case for the shuttle service). It's been a tough road but it makes it harder when most of the people I spoke with were so cold and heartless on the phone and I had to really push them to help me. How do cold, heartless people end up working in agencies that are supposed to be helping people? So far, this experience just seems to reinforce in me the fact that I am a burden on people and that the "system" could care less what happens to you. I kinda wish I could just curl up and die!!

Others have already offered good input here... the main bottom line is that unless you have other risk factors that would make trying bc pills an unwise option, you may need to try them and see how your body reacts. My only suggestion would be to try the pill or the nuva ring. I would not recommend the shots or patches that work for longer periods of time. If you react to the shots then there is no way to get it out of your system quickly wheras the pills you COULD stop taking if they gave you too much trouble. Good luck with whatever you decide to try.

Thinking of you and hope all goes well! Keep us posted on your progress when you feel up to it.

Oh How true this is!!!!! I wish we could diagnose the Dr's with this when they "earn" this diagnosis and force it to be in THEIR permanent record to create havoc on THEIR lives forever like they have done to some of us!!!!!!!!

Just FYI so you know..I don't think benadryl would have different ingredients, strengths or fillers just because you are in the UK..I could be wrong though. My Dad is an analytical research chemist for a large pharmecutical company and he says it isn't likely unless you are taking a generic form. Anyhow...mostly I wanted to say that Benadryl tends to act in one extreme or the other for people; it either makes them really groggy or it makes them tachy and energized.

Thanks everyone for your suggestions so far. I do get very frustrated especially because I live just outside a large metropolitan area. I'm not in city limits so I don't qualify for any city assistance and I can't afford to move within the city limits either. I had called the county I live in before and was told because I was not elderly I didn't qualify for any programs (even though I'm disabled and on Social Security). There is only one online grocery store I found that will deliver in my area (again very frustrating considering what a large populated area I'm in) but their prices were so high and I'm on a really tight budget (for example...they wanted $2.17 for a SMALL can of tomato soup that I can buy in the store for LESS than $1). Then there were delivery charges on top of that. A friend of mine called United Way in my area and they didn't know of any services in my area. I think I will try Carmen's idea of calling my local Human Services Dept again and see what they say. I don't qualify for Medicaid but I do have Medicare. As far as I know though, Medicare doesn't pay for anything like this type of stuff. My only other thought was to try to get a case worker through the mental health system because I know when I lived in another state it was the case workers job to assist you with whatever you needed..not just mental health. So, in the past, when I lived in this other state my case worker would take me to the store, Dr appt...wherever I needed if she was available and she would come to the house like once a week and just "chat" and make sure everything was okay. My hold-up on that is that my Long Term Disability carrier is trying very hard to say my condition is partly mental (this is so they don't have to continue to pay after another year) so I don't want to have to go through the Mental health system and give them any "ammunition" to say this is mental. UGGGHHHH!!! I don't know why they make it so hard for people to get basic help and again, it's especially frustrating outside a huge city. My experience is the smaller the town the more help there is but in a large city...forget it...some services won't cross any county line and NONE of my Dr's are in my county and there aren't many specialists in my county. Some of my Dr's are 30 miles away. Actually even the two closest grocery stores are not in my county either. I don't live in a rural area but I'm on the line of 3 different counties.

I am in need of any suggestions you guys might have. I live in the southeast U.S. and I live alone. I do belong to a church where some individuals are very supportive. My dilema is that I can't drive, where I live I don't have access to public transportation (such as a bus) and I can't afford taxi. Lately it's been increasingly difficult for me to find people from church who have the time and/or are willing to drive me places I need to go (such as the grocery store). I had one person who was very consistent but she is on vacation for 4-6 weeks. Plus, I'm really discouraged and wanting to be as independent from the church as possible. My main problem is not being able to get to the grocery store. I've needed to go for almost a week now but people have been too busy or on vacation. Has anyone else had this problem? Do you have any ideas of what I could do or who I could call for assistance? I have no family to help and I have no close friends that live near me; all of my "friends" here are from the church and things aren't working so great there right now. I just don't know where to turn. Does anyone know if there are any programs that assist people with rides? Thanks for any suggestions you may have and thanks for letting me vent too. I get really scared sometimes being in the situation I'm in. I try not to complain and I will eat eggs and ramen noodles for a while but a week of it is getting kinda old.

I get very frustrated that many Dr's say this is just anxiety (like even if it was "just anxiety" that's still a REAL problem that needs effective treatment). I think Dr's are trained to brush things off as "stress" or "In your head" (like your head isn't a part of your body???) when THEY don't understand something. They are trained to look for the concrete evidence (lab values and tests). If you think about it police are trained this way too. Police often are skeptical of a victims story until they find "facts and evidence" (in other words, if a woman is raped but it wasn't physically violent or obvious then it's "he said, she said" and many times the victim isn't believed or is extensively questioned). So...it's not limited to the medical community but it is terribly sad and damaging. Ok....I'll get off my soap box now To answer Persephones question-- my symptoms often wax and wane and shift. I've always had a struggle but I was able to work for nearly 5 years after having my pacemaker implanted. Then about 1 1/2 yrs ago things got suddenly much worse for me and I became unable to work again (I have no explanation for why things took such a rapid and quick decline). It is frustrating!!

Nina, I'm glad you were able to get away for a vacation! I'm sorry you feel so lousy now though. I dont have any experience with Lupron so I have no advice in that dept but just wanted to wish you well. I hope you don't have to go to the ER and that you feel MUCH better SOON

Welcome!!! Hope you will get some answers from this site!