hilfgirl33

Gwem, I am so sorry you are having such a hard time. I think most of us were at our worst before or right around the time of diagnosis. Once we found a doctor who had experience with dysautonomia/POTS knowledge, gradually most have improved, a lot to a fairly functional level. I hope that gives you hope. I was bedridden for several months at age 35, having to have my family take care of my 2 year old son, but with the right regimen dose and an understanding of what this disease is all about, I am taking care of him and even enjoying my life, just not in the same way that I was before. There are some people who have gotten better and there are some people who were cured, some who have had Chiari I malformations that were operated on. I have experienced relief in my symptoms I believe from seeing a D.O. who performs cranial osteopathy on me, which is gentle manipulation to realign the vertebral column and other body systems. Has anyone told you about upping your salt and water intake. I don't recommend this until you have a definitive diagnosis but I think this thing alone can help a great deal. Hope you get your answers really soon. Elaine

LOL.... I've played one many times on the Internet, Heck I diagnosed myself on the bleeping internet. My hubby thinks I should attend medical school (if only I weren't so tired !

medical transcriptionist who worked for years in a hospital

Well I guess misery loves company because I am also at my highest weight ever, the weather is nice here and my clothes have all shrunk also I take Lorazepam for anxiety/adrenaline rushes as it seems to be the only thing to help. I have tried 2 different SSRI's without much success, but have a prescription for Paxil that I may try. But I know that the Lorazepam has strongly contributed to my weight gain as well. I don't know what else to do though. I hear your frustration and I hope that Dr. Grubb has some better solution for you. (( HUGS ))

The coffee thing is really interesting to me because caffeine sends me into a total frenzy. I always feel like I have just had a pot of coffee anyway, I can't see drinking more.... Very interesting....

SO happy for you!! I read your other post and I've been staying away but I think I might just try 1/2 a glass with a lot of water next chance I get. BTW, the cheesecake sounded even yummier than that!!

Jackie, so sorry things didn't go the way you had been hoping, I know how frustrating that can be. I am very lucky to have my cardiologist (once I finally found him) because his daughter had POTS and Chronic fatigue syndrome. He said these go hand in hand and I was only missing one marker to be dx with chronic fatigue as well. He manages all my stuff except the female stuff (which I wish he would too because my gyn is CLUELESS and doesn't have the time or ambition to care). It sounds like this woman does care though and hopefully she'll be able to lead you in the right direction. I just don't understand why if she only treats pots ncs why she doesn't feel she's the right person is it because she only treats pediatric patients? If you had a 40 beat increase with the ER and with Dr. Grubb, it sounds a lot like POTS to me, so don't doubt yourself because of the tilt. Sometimes our bodies may be working better than others and maybe that's why the tilt was negative that day, but on another day it wouldn't have been - I don't know, just speculating. hope this helps

Well I miscarried a baby with intrauterine growth problems at 18 weeks, but was not having any major or minor signs of POTS for a few years after this happened so I don't know if it could be related or not. Interesting, though, as I have a TON of female problems.

I have taken SSRI's along with a beta blocker and my doctor is an expert in POTS and he said it was safe. As for Atenolol, I took it first at 50 mg daily with side effects of extreme dizziness, nausea, especially in the morning and excessive fatigue. I could not tolerate this even at 25 mg daily. I was switched to Toprol and I cut the 25 mg dose in half and take 1/2 in the morning and 1/2 in the evening and I am able to tolerate the lower dose better this way. Hope this helps. It is so hard to know who to trust and what to take. I literally think I have post traumatic stress about taking new meds because of the # of bad reactions I've had.

(( HUGS )) Sometimes I think about the things I miss being able to do with my daughter and it breaks my heart (she is also a wonderful teenager), but then I think that if I didn't have POTS I would probalby definitely be working so I'd be missing stuff for that, and at least now I am always home for her. Small consolation I know but I guess life is not perfect, but you gotta get the good where you can!!!

((( HUGS ))) Hope you feel better soon. It is truly amazing what we can do even when feeling awful.

Just wanted to send prayers and (hugs) your way. That is a scary experience and I think you probably won't feel significantly better until you get an answer. Good luck to you and please keep us posted!

Dena, Yes I agree with lists but 9 times out of 10, I forget the list I made either at home or in the car once I get into the store.......... I wish we could just write lists on ourselves

1. Name Elaine 2. Age 37 3. Dx POTS edited to add orthostatic hypotension and vasovagal syncope 4. Age at dx 35 5. Where you live PA 6. Symptoms at worst Bedridden, extreme dizziness, tachycardia, chest pain, left arm numbness, anxiety, palpitations, fatigue, extreme exercise intolerance 7. Symptoms at best fatigue, chest pain after being on feet for a while, some light-headedness, tachy and shaky if try to do too much 8. Medications/treatments, etc. that didn't work for you Florinef, Mitodrine, Cortef, IV saline infusion 9. Medications/treatments, etc., that do work for you Toprol 12.5 mg twice a day, salt and water therapy and Lorazepam 2.5 mg daily

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!!

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

EM I have heard about magnesium but have never taken it on a regular basis. However I do eat lots of nuts and leafy greens (most of the time). But I think I'll try supplementing with a lower dose and see if it makes a difference. Thanks for that info !!

He did give me an EKG in the office, but of course my heart was just fine (92 bpm, not too shabby!!) in sinus rhythm. I told him I was very concerned as it felt different than anything I had ever felt before but he told me it is quite common. He told me my autonomic nervous system is out of whack and can cause all kinds of palpitations and strong tremors. I really like this doctor but I am thinking I'll get a 2nd opinion. He also prescribed 10 mg Paxil, has anyone tried this. I tried Celexa before and had some stomach side effects but no real noticeable difference, but of course I was taking really lose dose of that too. Just thought I'd give you my update! THanks for your replies re this! Elaine

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!!!!

I get this too, after doing too much or exercising (the little I can do)... I tend to think it comes from being overstimulated or overtired.

Tearose, I haven't had the palps nearly as bad as they were. I do have a hormonal problem (polycystic ovarian syndrome) and I haven't had a period since early January and I think now that the palps were worsened because I was ovulating -or trying to - just a few weeks ago when this happened and now I'm getting ready to expect my period. I couldn't see the cardiologist til this Wednesday as he was out of town. If things got/get worse, though, I was definitely willing to go get it checked out before that at the ER. Thanks for asking. THe facial numbness too has been pretty much gone, too, although when I'm getting really fatigued I feel it creeping up a bit. Definitely a weird new symptom!!

Future: Yes, absolutely. I cannot eat sugar alone because of the potential adrenaline rush (sometimes I get away with it - who knows why??) and yes, I definitely get hungry very quickly afterwards. For instance, my hubby can eat powdered donuts and soda for breakfast and go til mid afternoon. If I ate that, well I can't tell you what kind of trouble I'd be in. It really amazes me that people can actually eat sugar alone or as a meal (like muffins or donut for breakfast!!) Don't know either if that is a sign in itself of diabetes, but I've been tested a few times (a few years back) and like I said was basically negative.

EM, what type of progesterone cream do you use and how much? I have been toying with this as I have all of the above symptoms (37) and more I think. My PMS is severe and debilitating at times. But I am scared to death to try anything.

Roy, The sugar thing gets me too. I did see an endocrinologist who said that eating sugar raises adrenaline levels and that's why we feel so edgy at first after we eat it (or at least I do) and even get palps and tachy with it, then feel exhaustion afterwards. I really thought it was a blood sugar/diabetes type issue but I have tested negative (although borderline twice) for this. Nina, your doc is a wise man , I believe this may be true, although along with other things as well, of course.

Nina, That is one component of POTS I can gladly say I do not have. I guess it makes things interesting if not a little bizarre to have your things just popping out on you. Does it hurt?? Here's hoping you get everything back in place real soon!!! (( HUGS )) Elaine