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Hi Julie! I'm currently taking Celexa (very low 2.5mg dose) that I began in November. I started it for abominal pain & IBS symptoms. However, the pain & symptoms are creeping back (only 2 months!!!). Do you think I should ask my doc about Doxepin as an alternative or maybe even an adjunct to my Celexa? Ironically I also have GERD. Hilbiligrl...I'm so happy for you!!! I can tell by your post how "lit up" and happy you are to have found this doctor. Good for you and continue to let us know how things are going.

Yes, Sarah, you just described me so there is definitely some kind of connection. First I was diagnosed with Fibro as those were the symptoms present then CFS and last was Dysautonomia b/c as I deteriorated, I started having changes in my vitals signs and getting orthostatic. I sure wish they'd find the link and what makes us the way we are!

Sarah....I also loved the article. Thanks for sharing it here!

If the "shot" had epinephrine in it...absolutely! But it sounds like your other issues could make you feel bad also. BTW: always let your dentist know that you must have the lidocaine (or novocaine) without epi! I hope you start feeling better.

Oh yea I forgot to add...I also asked my doc about a volume expander such as albumin but he advised against it. He thinks that the medical community can sometimes "mess up" us dysautonomics so we must be very careful in what we do partake in...LOL!

How dysfunctional do you have to be to get disability? At one point, I was considering it but fought it hard b/c I love my job (teach nursing)and am doing much better thanks to my cardiologist. But I have a job where I'm off ~4 months/year so I'm afraid I wouldn't qualify if I ever really needed it. Plus, I have worked online teaching so I can pull "some" income from home but not nearly what I'd make fulltime. Can anyone advise? Thanks!

Hi Jodielynn! I have never thought about using epogen but can see where it might help. I did ask my cardiologist about receiving intermittent blood transfusions but he advised against it. The reason you have trouble with your insurance paying for epogen is b/c it is extremely expensive (~$2000/shot at my hospital). However, if a doctor declares it medically necessary and you have failed on less expensive treatments...hang in there b/c insurance may come around as they may not have a choice. The only thing that I would be concerned about (& this is only for myself) would be too thick blood. I already have chest pain and family history of MI. Also, my BP goes up when I have OI so I suppose I wouldn't be a candidate for it anyway. I certainly hope you get it if you need it and let us know how it goes!

Thanks for posting this...great info. I read it and thought "wow, I've experienced these very symptoms!" But I agree with issie above...this is only one piece of the puzzle &/or the chicken/egg argument (which came first?). Hang in there and if you have a gut feeling that you aren't jiving with this doctor, let him go. You really need to feel confident about the one that is treating you.

My story goes like this: Diagnosed with Dys in Summer 2010 by a cardiologist who happens to care for a large group of Dysautonomics. He sold me this book & told me to read it http://www.mitralvalveprolapse.com/ After reading it and increasing my water intake by ALOT (4L or more a day) I started feeling slightly better. Then he started me on Inderal (propanolol) on an extremely low dose and told me to go really slow with it. He didn't give me any other med as he states Dysautonomics are too sensitive for that. Once the beta blocker was in my system, I felt a little better. However, I could not go any higher a dose than 5mg in am & 5mg in pm and sometimes I feel like even that is a little too much. If I start having a crisis, I'll take an extra 5mg of the beta as it calms my nervous system. Through all of this time I had extreme abdominal pain along with nausea & diarrhea....cardiologist put me on extremely low dose of celexa (I take 2.5mg in am). It immediately helped my pain. However, it's been a little over 2 months now and the pain is returning (as well as chest pain). So I'm not sure what's going to happen next but with water, Inderal, & Celexa I feel like a human being again. So far, I've been happy with my results but this pain has got to stop. I'm seeing my doctor again in a week or so with my fingers crossed. I hope you feel better and get the answers/treatment that you need. This forum is a great place to get information and support!

Thanks you two. I must get a handle on this pain! It makes working very difficult although I've held in for over a year now. Thankfully my job has lots of time off or I don't know what I'd do.

I was reading information on this site and there is a write up on the types of issues that can cause POTS. Obviously this happens b/c we all have different symptoms and reactions to things. However, I'm just wondering how anyone may know the "type" of POTS they have. Was it the particular doctor or the Mayo clinic or something else that diagnosed you? Just wondering if I should pursue more specialty than my cardiologist (who has been a Godsend). I'm having problems with chest & abdominal pain & nausea (usually from the pain). While I do have orthostatic tachycardia, my BP goes UP (not down). I'm thinking I have splanchnic pooling due to sometimes SOB after eating and sometimes I think I can feel my pulse in my LUQ...weird. Example tonight: lying in my recliner I felt like my heart was beating in my LUQ abd (always where my pain is located too). I took my vitals which were 101/62-93. Knowing that being upright raises my BP, I sat up and after a few minutes my vitals were: 125/87-87. Anyway, any advise is appreciated. I just want my symptoms under control to live the best quality of life as possible.

Hi Lieze, Thanks for posting this topic. I'm trying to figure out if your dysautonomia is the reason you are sensitive to your blood sugar level. As a nurse, I've never heard of Reactive Hypoglycemia but I have had some experience with what you are describing. I used to have rebound hypoglycemia (where my body would shoot out lots of insulin in relation to eating...say, a donut...only to drop my sugar). However, every time I checked my sugar, it would be on the low end of normal (60 or 70). I never understood why I had these symptoms (such as you describe) with a normal BS. I suppose this is the Dys. Afterall, it can affect our hormones and insulin is a hormone. Regarding your diet, it is my belief that EVERY single person should be on a diabetic diet. Why? Because it is well balanced and calorie appropriate. When you have a low sugar, you should eat/drink a small amount of sugar (1 cup of juice-NO extra sugar added) followed by a protein such as peanut butter crackers & skim milk. It sounds like you are taking steps to correct your problem and I do wish you success with it. You've gotten great advice from the posters in this thread. I've really come to love this place!

I can relate to your reaction to your nurse b/c I can't tell you how many times I went to the doctor hoping to find something wrong and an abnormal test. My husband would say to me..."it's like you want something to be wrong" and I'd simply tell him: "YES, I DO!!! I want something discovered so that I can be treated and keep living my life & ultimately feel much better". But when I finally did get a diagnosis, it wasn't so good since this is a very poorly understood disease.

Hi Friedbrain! I'm not sure what is happening in that video with the exception that the title links it to POTS. I don't have shaking episodes but did experience something similar 4 years ago (prior to diagnosis) after my father passed away. I was at my moms house a week after his funeral and was looking at his medical records to make sure everything was done appropriately (I'm a nurse). I've dealt with PEA many times with patients but having to read that about my own father was just too much. I just couldn't handle it and attribute my shaking episode to stress/emotions/etc....but looking back I can see that it could have been related to Dysautonomia.

Wow!!! So sorry you experienced this. The next time you are in that position, you can say "HELLO...I'm right here, I'm the patient-remember-and I'm telling you that this is how I feel..." and list your symptoms in an orderly manner as well as how they are affecting your life. I can't stand when healthcare providers treat the numbers and not the patient. I teach nursing and all of my students learn from me upfront that measureable things are important (such as vital signs, labs, etc) BUT the most important observation & source of information is the patient!!! Hang in there! I wish I could send all of you to my cardiologist...he's been a Godsend (so far). Ironically, he has accumulated a population of patients with Dysautonomia through the years due to word-of-mouth. He told me there isn't any money in treating us which is why many doctors don't treat Dys. Keep the faith.

Coppelia Tarantal, Hi...I just wanted to let you know that you should start this new med at the lowest dose possible. If it isn't available, check with your pharmacy to see if you can get a liquid form. This is what I had to do with my Celexa and I'm still taking the liquid b/c when I tried to increase my dose, the SE made me feel very strange (like a zombie). My doctor has engrained in my head that I need to start out meds with neonatal/pediatic doses (you sound similar). What has helped my symptoms are water loading (4L/day), Vitamin D, Metoprolol (Low dose), & Celexa (very low dose). I've also found that (so far) I can do nothing about a symptom exacerbation during "that time of month". I hope you feel better soon.

Hi kcmom. I'm very sorry to hear about what you & your son are going through. A while back I came across a video and I'm wondering if your sons epidsodes are similar. Please check it out: I do get fluctuations in my symptoms and sometimes experience things I've never felt before so I just chalk it up to Dys although it is very disconcerting at times. Here's hoping everything goes well for you & your son! Ya'll are in my prayers.

Hi Lissy! Not to worry...I just had a filling and was so scared due to the whole process and getting the anesthesia. What you need is lidocaine without epinephrine. Just let your dentist know that you have Dysautonmia and you need lidocaine without epi. You will do fine but I certainly hope you get better with all that's going on. And yes...your stress can affect the pheo test so you might want to post pone it. Here ya go: http://labtestsonline.org/understanding/analytes/urine_metanephrine/test.html

Wow...I have ALL of the symptoms of MCA but my B-blocker is my life saver. BTW...LOVE your quotes!

ABSOLUTELY I feel a link b/w this condition (symptoms) and my "dot". As a matter of fact, I noticed the link prior to ever being diagnosed with Dys (I was diagnosed in July/Aug). And ironically I'm having PMS right now and thus the miserable symptoms have begun!!! The main thing I've noticed so far is dizziness is much more prominent. But I also have a plethora of the other miserable symptoms such as increased abdominal pain or pain sensitivity in general, IBS-D which is usually OK without my dot, extremely cold all the time with cold hands/feet, stiffness in my joints, tinnitus, pressure in my head, heart racing, shortness of breath, anxiety, feeling of impending doom, shall I go on...? LOL! And it seems my symptoms last through PMS and all of my bleeding (usu. 10 days). Another interesting point is that I was unable to tolerate a low estrogen BCP (tried 3 different times) b/c I had such severe abd pain. My GYN wanted me on them to prevent my endometriosis from growing back. Now I dread "that time of the month" and fell helpless when it happens.

To Catlady & Hilbiligirl, You must check out this website and get a copy of this book if you don't already have it: http://www.mitralvalveprolapse.com/ It explains everything and can help put your mind at ease. Regarding the SSRIs....have your doctors tried a very, very low dose? My doctor told me I needed neonatal type doses at first and then work myself up if that's even possible. He said I was one of those that are very sensitive to meds. For example, he started me on the lowest dose of Celexa and told me to take half the dose (5mg)...well, I had to get the pharmacy to fill it in liquid form (tastes awful) & I started with 2.5mg. I tried to up my dose one day to 5mg and was a zombie so I went back to a quarter of the dose. Remember, Low & Slow with meds. Hope everyone gets to feeling better and has a great New Year!

K...thanks! And please let us know what you find out about your ears. My problems started a few years back (before my diagnosis of Dysautonmia) after a flight to Disney World. I developed a cold so the flight back left me with fluid behind my ears. I swear I still feel like it's there even after I was treated with meds back then. When I wash my hair or scratch my head, my ears feel as if there is fluid in them (strange). THANKS to everyone for their responses!

Count me in with you....I've had that too, or similar to it. At times I can hear my pulse.

Hi Dani! I've been on Celexa for almost 2 months now and I don't think I could go without it. It has transformed me from a recluse into a normal functioning/working human being. I didn't want to take it at first (I've been on Lexapro before) but my cardiologist insisted. I was having daily abd pain that made me incapacitated for part of the day. Thank God for my beta blocker, water, & Celexa. Oh yea...and my doctor!