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Would be interested to know if any of you have tried Ritalin? One neurologist suggested that it might make you (with autonomic problems) function better as well as help with migraines. It seems to help for me. I think it is a good idea to always continue to seek new solutions to help alleviate our problems given no one seems to have a real grip on the matter. Your thoughts?

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:D I gotta be curious and ask what benefits you have experienced with it specifically. Also do you know why it helps?And what drug interactions would it have? The thing that I would be concerned with is ...isn't Ritalin an addictive drug?Sorry to be so snoopy but I want to explore every option for a "normal" life! :rolleyes:
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I have heard of Ritalin being used for POTS. My sister was diagnosed with POTS before she was diagnosed with MS and she was given one dose of Ritalin by a physician she was working with at the time (as a nurse) who is a specialist in NCS/POTS. She didn't report feeling anything bad from it, but then again, my sister, bless her heart, I believe inherited more of my father's genes than my mother's and can take just about any drug without a problem. Me...now that's another story...so that is why I'm always leery. It sounds like it works for you so good for you.

I myself am constantly battling fear of addictive medications but when it comes down to functioning what is a person supposed to do? For me, it has been to take chances and it has been the hardest thing I've ever had to do.

One doctor keeps giving me the analogy of diabetes and insulin, etc. If you had a condition like that and HAD to take insulin, would that be considered an addiction? If something helps your body do something it is failing to do automatically, then I suppose it is needed....but scary still? yes at least to me. I'm glad you have found something that works for you and that you only have to take a small dose as needed without side effects. Kudos!!! :)

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Jackie, I think I'm your long lost twin. I read previously that you are/were a medical transcriptionist (as I am). Now I read that you have a sister with MS, and so do I. Your analogy about insulin and diabetes has been used on me and by me as well.

I also cannot do the transcription anymore because to make the decent money you have to spend so much time and be tense at the computer and that is a major aggravator of my symptoms (contrary to the belief of disability who has denied me).

Anyway, just thought there were some weird coincidences with us!!!!

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hilfgirl33 you are right! Wow we do have a lot in common! Long lost sister indeed. Yes, I am still a medical transcriptionist and I work from home but since I got "sick" last summer (and after 100+ days of constant tachycardia and being mistreated as anxiety I was finally diagnosed with POTS and unable to work during that time) I find I cannot type more than a couple hours a day where I used to be able to pump out 1000 lines in about 4 to 4-1/2 hours believe it or not. Lately, it has been taking me 3+ hours to do what I could most recently in 1-1/2 hours (approximately 400 lines) so my income is cut in half and I have trouble with words that I've never had before. I have always been an excellent speller and now sometimes...well it just isn't there. I have to look up drugs all the time because I simply can't remember whether they are capitalized or not and the neck and back pain is horrible. It is difficult to concentrate sometimes and frustrating. I also feel very "worked up" when I'm done typing to say the least, so I believe you when you say you can't work. There is something about the repetitive hand movement (especially when typing fast) that gets my body really going I notice but I can't afford not to work and feel constantly that I need to do more and do more and get so frustrated and angry at myself that I just can't seem to do it like I used to. When I was off work since I'm a statutory employee without benefits we got very behind financially so there is that pressure. I just try to do the best I can and pray it will get better. The only way this works for me is that 1. it is from home and 2. it is flexible hours. I do not have a set schedule. I simply commit to a line count and a day and make sure I get them done. I set my commitment very low so that I won't get in trouble for not meeting commitment and then I strive to go over that but usually don't.

About my family, it is strange. We have such a mish-mash of health issues running through the family but it is like we are just now seeing the connections and the manifestations for most of us. My mother was diagnosed with chronic fatigue 13 years ago when it was hardly heard of and they treated her as if it was all hysterical female and anxiety because she had heart palpitations, tachycardia, and sleep problems, etc. It all started during a bout with mono and strep that wouldn't go away with multiple courses of antibiotics, etc. Eventually they diagnosed her chronic fatigue but she could not tolerate the antidepressants they tried her on so she simply takes .5 mg of Ativan a day that seems to work for her and now she is on a beta blocker because they have found that her entire aorta is enlarged (strange thing where they first thought it was an aneurysm but during cardiac cath they found the whole aorta to be enlarged). My mom is now 70. Since her now 68 year old sister just started passing out a few years ago and was tilt tabled and diagnosed with NCS and my sister about 5 or so years ago was first diagnosed with POTS and then soon after with MS, my mother asked her doctor if she could have this autonomic instability problem and his response was "yea, she could" but never offered to tilt her or anything so I guess his opinion must be so what if you do. My nephew who is about 30 has passed out since he was a teenager and was just recently diagnosed NCS and being treated within the past few years. Within the past couple years my eldest sister who is 42 was diagnosed with fibromyalgia and now with me my second episode of tachycardia (1 from steroids that took weeks to balance out after a few doses of beta blocker that I didn't tolerate) and now last year after taking calcium supplements which threw my body into a complete spin-out. I have other nieces who pass out, and cousins who pass out and another nephew diagnosed with POTS some years ago....I guess my point is this, either this stuff is just now coming on all of us or there is some genetic predisposition and connection in all these disorders and they are being triggered by different mechanisms and manifesting in different ways in each of us. Fifteen years ago, none of us had any of these problems and even I myself never took the time to think about it and look around me at my whole family until I myself was diagnosed. It is clear to me there is some genetic connection but the age of onset and diagnosis is so varied in all these people it makes me wonder about environmental triggers or something. If I were a person looking into this from the outside, I would almost think "well there are so many of them with problems that they are all rushing to get diagnosed and invariably find what they are looking for" but honestly I never made the connection in my mind until it happened to me even though my sister with MS came to the conclusion 5 years ago. When I got sick, I thought it was hyperthyroid honestly or parathyroid triggered by the calcium.

I know this is getting very long but since you are an MT you will know what I mean when I tell you this, but having copies of my medical records from my inpatient admission last summer, I have to laugh (rather than cry I suppose) at the fact that one of the doctor consults in the hsp put under his impression "medical transcriptionist" (as well as other impressions, but this stuck out to me still as belonging solely under the social history and I found it inappropriate as if my profession was the cause of my symptoms....in like I was imaginging conditions I was typing about) haha! but honestly, they were ruling me out for carcinoid syndrome and a bunch of stuff that I've never even heard of or would have thought of in connection with my problems at the time or even typed about so it is hard to imagine you have something you don't know exists in the first place! I just thought you might get a kick out of that....Impession: Medical transcriptionist. This is what the insurance companies are paying doctors for! They also put in one consult that I denied use of diuretics and cathartics....yes, in all cases, when you don't know why the patient's body cannot regulate her fluid levels and she is having daily diarrhea, can't eat, has lost 30 pounds, has a pounding rapid heart rate, a 40-beat increase on standing, electrolyte imbalances, etc., certainly it is something she is doing to herself. I imagine there are people who are mentally ill out there who might do that to themselves so I suppose by the doctors in their humanity and lack of knowledge not understanding they have to take into consideration the fact that I might be doing it to myself, but I honestly tell you that is the worst feeling in the world to realize that they were secretly suspecting I was doing it to myself and it hurts to think of it even now. I was never so sick in my life and never EVER want to go through that again. That is why I take the beta blocker and I take the Xanax against what I WANT to do and that is not put any drugs into my body and fight to keep moving because those 100 days felt like a lifetime and I'm not going back there if I can help it. So now I'm off on a ramble, but thanks for listening! I'm still in the stages of acceptance and whenever I think of last summer I just get upset all over again.

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I know what you mean, I'm still struggling with the suspicions that I'm somehow causing this or making it seem worse than it is. My mom's first response is to start asking me if I'm doing everything I'm supposed to do. She means well but I'm touchy on the subject anyway.

My friends and family (that I dont see regularly) still ask "haven't they found out what's wrong yet?" I cant seem to get them to understand that POTS is what's wrong it just doesnt have a fix! Maybe it would be easier to handle if people had actually heard of it before.

It adds to our "uniqueness" :blink: Just another way to be different :)

Who needs "normal" anyway? :angry:

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Jackie, My family has a strange array of things, not as many as yours, but all could definitely be linked. My mother I believe has POTS although won't go to the doctor for it (at least not one that knows what POTS is). I have documented POTS myself in my house when she went from a resting heart rate of 95 to a standing heart rate of 135. She said she felt like she was racing that day. However, she is much more functional than I am in a lot of ways and she drinks a pot of coffee a day, smokes, eats sugar, so I feel she probaly has a mild form of POTS that is aggravated by all her bad habits. I can't even drink one cup of coffee or I'd be flat on my back for two days!!! My sister with MS also has polycystic ovarian syndrome, and I also have that as does my niece. This is actually linked to blood sugar and insulin issues first and foremost that disrupt the whole hormonal balance. My sister with MS and I get a ton of the same type symptoms but I do not have MS per MRI of the brain and she does. She does not have blatant POTS though, I don't believe. My other sister had a rampant anxiety disorder and my brother believes he has blood sugar issues, gets weak, shaky, funny feeling if he doesn't eat protein and eats sugar alone. He has not been tested for this though.

My dad is perfectly healthy so it seems my mom is the ringleader in all this. My mom, sister and I all have a really difficult time tolerating medication, with me being the worst of the bunch.

I know what you're saying about an environmental trigger because my mom's symptoms, my POTS and my sister's MS diagnosis all came within 2 years of one another. Prior to that, me and my sis were extremely healthy, nonsmoking, exercising, eating healthy foods, etc. My mom has always been a bit of a mess. Also, I grew up next door to a girl exactly the same age as me who also has POTS.

I've encountered the medical transcriptionist thing too from one female ER doctor who finally diagnosed me with anxiety (this was when my hr went from 100 flat on my back to 135 when I sat up for her to listen!). She told me I seemed nervous. Of course, when your heart is beating at 150+ bpm on entry to the ER I am not the most relaxed ? I wish I could've reached into her chest and sped her heart rate up for a few hours and see how she liked it !!! LOL

The transcription makes me ill. I'm hoping that I will be able to return to it once my 4 year old son is in school all day, that way I will get time to work a little then rest when I need to, but I think I may need to make a career change. Who knows, maybe I'll be better by then. Wouldn't it be nice?

Gotta run and play playstation with my son!!! LOL

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hilfgirl33 - gotta say, the "you seem nervous" when your heart is racing out of your chest rings many bells.....I loved your thought about reaching into her chest and speeding her up and see how nervous she felt after a few hours (let alone days!). I've always felt the same way. Yes, I feel nervous, but eegads it is hard to relax when your heart is racing like you are running a marathon. Yes, it may not be right, but my sister, who is very religious, often jokes and says pray for them to have even 1 hour of understanding. If even a fraction of doctors themselves found themselves suffering from this I think we'd see a quick turn around in understanding, compassion, and treatment. We have A LOT in common!

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I also wanted to say I'm getting to where I can't stand the transcription either and this past Friday was actually the first day in a long time I actually totally could not bring myself to do it. I have just come off a 10-day course of antibiotics for a sinus infection and my period just ended and honestly I've been sick as a dog all weekend. The way I felt Friday scared me and I thought oh no here we go....I've been resting all weekend, drinking, and even today at the urging of my husband who has been making an effort to be more understanding drinking and eating anything salty but I'm still having symptomatic low blood pressure this weekend (today 86/68) so I definitely think it is the blood pressure and the beta blocker...and I was so depressed yesterday. I have days like that and sometimes my blood pressure is real low and sometimes it isn't so I'm not sure if it is the beta blocker causing the depressive days or not. Does anybody experience this on beta blockers? I'm taking 25 mg of atenolol. I just feel weak, dizzy, and a bit off in my concentration...just icky all over and ache. Thank God today the depression is a bit better. I hate it when I get gloomy...I sure hope my appointment next month helps somehow. It seems I've been doing okay but there are times like this I realize surprise...it isn't gone. I don't know if the gloomy crying moods are hormonal or if I'm truly just turning into a whack basket...some days anxious and pushing to get a bunch of things done and then some days depressed and fatigued. God I hope it isn't mental. I'm sure it has been discussed before but I guess I need to hear it again...do others have moody periods like this and bad days and better days no matter what they eat or drink? I think my period has something to do with it in addition to the beta blocker...don't know which way to turn next.

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Jackie, My period totally totally wipes me out. This month I had severe depression and anxiety as PMS. My periods are irregular and I had not gotten one since January 10, so I think I was extra whacked out. And lately I have been so depressed about this illness and everything just seems so difficult. I haven't been back to my cranial osteopathy guy since November - and I am going this Thursday. I'm hoping he will help. I also have a prescription for Paxil in my purse which I haven't filled yet.

Yes, depression is something I've been struggling with lately. I think I am going to start to talk to someone. I think it is a physical/chemical depression mainly, but the way it affects my life is starting to cause depression. I keep watching tv shows where people are working and jogging and playing tennis and hosting dinner parties and I feel really bitter about it. My mind is not in a good place right now, so I feel for you. Hoping that it gets better for both of us soon (( HUGS ))!!

P.S. You are not a whack basket!!! But I think if we let this disease get the best of us we might turn a little whacky!!

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Jackie

I know what you mean about reading some of the crap that they put in your medical records, it gives you a chance to see how your doctors really feel about you. What's worse is when they say it to your face over and over again. Never really listening to you tell them that you are truly medically ill. When you have no history of mental illness and just because they lack the medical experience or knowledge of your symptoms, let alone the persistence to keep looking for you. You just end up going home and suffering!

Can you tell that I'm at the very least bitter from my previous experiences. My ONLY saving grace is that I have worked in the emergency room for 10 years and I was treated by doctors here in the ED that knew me and knew that I was experiencing what I was saying. They didn't question my mental stability for even a second. So much for my primary doctors having so much faith in me.

When they admitted me to the cardiology floor, the nurses made me feel horrible by telling me that "I was the most well patient on the whole floor" as my heart rate was going along at 160 trying to sleep, I certainly felt far from well.

Some of the doctors told me that my symptoms couldn't be brought on by anxiety, others said it could. I told all of them that I wasn't suffering from anxiety, that I wasn't trying to make my heart and body do these weird things.

We need to educate the medical community and the public (all the poor people out there that might be going through this nightmere!)

Steph

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;) I had a bad experience with a neurologist like that. First he said I had calcium deposits on my brain gave me meds and exercises to do. A month later still no better he said I had a pinched nerve in my neck-I got injections in the back of my neck which took away the pressure I felt but I still passed out. Next was MS, I had an MRI AFTER he told me "without doubt" that I had MS. The MRI was clear so he was still sure that I had it so he wanted to spinal tap me. Absolutely NOT!!!

During the course of this I was fighting to keep my job at the usps and was really frustrated!

He then decided I was depressed- well I got angry. He wanted to prescribe me antidepressents and then see me in 6 weeks ( still not knowing why I was blacking out and not showing any interest in finding out )

I then said" I'm not DEPRESSED I'm ANGRY! how would you feel if you kept passing out and the DR you see says he dont know why but he'll see you back in 6 weeks?" His response is why I stopped going there. He had the nerve to look at me and say " Well then maybe it's anxiety frustration"

I tricked his staff into referring me to another neurologist and he looked at me and said "I dont feel its MS and I want to send you to do a tilt table test because I think it sounds like NCS"

That's when my life started to change for the best! It still took about another year to get to the POTS diagnosis but after two more cardiologists and an endocronologist this is where I am now.

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Really sad part is that this isn't all that uncommon. My wife went through a lot of similar things. "It's all in your head". One put her on anti depressants even though she wasn't depressed. It caused her to lose more weight (which she couldn't afford to lose) and basically made her hyper active. It also turned out that when she got to the point of having a pacemaker implanted her doctor told her that certain anti depressant meds make NCS worse and that she could have probably avoided a pacemaker had this been diagnosed when it should have been.

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