worththewords

This is really common for me. I've been told not to worry about them as they are benign.

Isn't that considered an autoimmune problem? I might be wrong but I thought I read about that somewhere. Can't POTS be brought on by autoimmune problems?

Is this for Lyme? Or helpful for anyone with dysautonomia? What exactly does it help with? Anymore info on the topic would. I'd like to read some articles about it if anyone has anything.

Could you tell us more about it? What symptoms does it work for? What do you have to be lacking? etc.

I don't know anything about Autonomic Neuoropathy but for me prednisone makes my POTS symptoms go away and I feel almost normal. It also might help you gain back some of the weight that you lost as it helps you retain fluids.

Last night I was watching The Path to 9/11 (very informative) and all of the sudden I felt this wave come over me and I thought I was going to pass right out. But I was sitting down! I've never felt like that while sitting down. My fiance got the blood pressure machine but it took him a couple minutes to get everything set up. I remained in the same position and took my BP. It was 90/37 by the time I took but my pulse was okay at 105. I can't imagine how low it was when I thought I was going to pass out. I thought maybe I was dehydrated, overdid it a bit, if anyone read my last post on exhaustion you know I have a lot on my place right now. So I drank a lot of water and felt a little better by the time I went to bed. Major drops in BP like that usually drain the life out of me and last night was no exception. I woke up this morning to some strange tachycardia and decided maybe I should call my cardio. I'm set to see him Oct. 4th but just to play it safe. So I talk to his typical secretary who I managed to make nice with awhile back so I get what I need from them. But she transfers me to someone new to make my appointment! She schedules me for September 21st! I'm like gee, thanks, can you put me on a waiting list for cancellations? She asked why I was coming to see him. I tell her my BP was 90/37 last night and she asks me what that means?! Why are you working for a cardiologist if you don't even have a clue about blood pressure? She wouldn't even put me on a waiting list because apparently it is a mile long. Worst case scenario, I have his cell phone number for after hours. I just feel funny about that. Or if I feel worse while he is there, I may call and have him call me back. But has this happened to anyone while sitting?? I guess this is a new one for me.

Sadly, with my research on Ivabradine and some other meds that might be helpful to me that are only available in the UK plus what I learned while I was at Mayo.. the US makes decisions based on how much money they will make off of it. All my doctors think Ivabradine would really help me but none of them believe it will come to the US. It's actually really frustrating to think about.

I've been waiting for Ivabradine to come to the US since I heard about it at Mayo back in 2003. (I'm allergic to beta blockers) So far it is just available in the UK. They will be trying for Canada next and then the US. However, Mayo informed me not to get my hopes up as pharmecutical companies in the US may not be interested because they won't make enough money off of it. (I won't even get started on my feelings about this..) I'm actually having a low diastolic tonight - it's staying at 37. The only time it has ever been this low is during a tilt table test so I'm a little alarmed. Although I am under a lot of stress, and I made the mistake of not drinking enough today. I'm drinking as I type trying to re-hydrate myself. I also get low BP at night sometimes - wake up shaking. I usually sit up, drink some water, and it will subside. It's still alarming though.

I'm assuming you are referring to the Cleveland Clinic in Weston? The one in Naples was bought up by another company. I haven't heard about any POTS doctors there but maybe try University of Miami. You always here good things about them. If by chance you did mean the one in Naples, which is now called something else, I can give you the name of a good cardio and GI. Just let me know!

I thought Dr. Miles retired!! He did my double cardiac ablation in Naples, although he was located in Ft. Myers at the time. I know other patients of his were very sad to see him leave Ft. Myers as he was a great doctor. I think they were even making the trip to Gainesville to see him but I thought one of them told me he retired. I'm sorry he doesn't know what to do for you anymore. I wish he would have diagnosed me with POTS first before doing my ablation, personally. I'll be honest, I know someone who went to see Dr. Chesire and found it to be a waste of a trip. However, I know there is another neurologist at Mayo-Jax now that is supposed to be really good that Michelle was telling me about. Her name is Dr. Blitshteyn and I think she even helps out DINET. I plan on trying to see her if I get the time to head up to Jacksonville because I have had terrible luck locally with neuros.

I take Klonopin twice a day - in the morning and at night. As odd as it sounds, the one I take at night doesn't really make me sleepy but I have to fight the sleepiness in the morning after taking it. I don't take vitamins. I've had some doctors tell me to take them and others tell me not to take them. It was too many conflicting opinions for my taste. Maybe when I go back to the doctor next month I'll see their current thoughts on it. And I always eat healthy but maybe not well. It seems by the time I prepare food for my mom and sometimes my fiance. Take food to her, run back and forth getting her a drink, salt, whatever else she wants, and start to tackle the mess of the kitchen I'm too tired to even eat myself. I'd rather take that time to just lay down while I have a break while she is eating! That's something I could work on more but I like to grab a nap whenever I can.

This morning I woke up completely exhausted. I had slept hard but woke up feeling like I had only been sleeping like 15 minutes before my alarm went off signaling the madness that has become my daily routine. I thought about how celebrities suffer from exhaustion. I was wishing one of their doctors would just appear, diagnose me with exhaustion, and give me a few days off from life. If only.. I found out in late June that my mom was sick and was going to have to go through 6 months of treatment. I'm really the only family in the area so for the past 4 weeks I've been taking care of my mom day and night. We have one month down and five more to go! Taking care of her is a full-time job but I'm not complaining, I wouldn't have it any other way. She is my mom, afterall. On top of it though, I am going to school full-time. In December I graduate from the substance abuse studies program and become a certified addiction counselor. Therefore this semester's courseload is harder than usual and even more demanding of my time. I have two patients for the first time and my every word and move is being supervised. No pressure or stress there! Suprisingly out of the past 4 weeks I've only had 1 day where I was really sick (dizzy, low BP, etc.). Oddly enough, (and knock on wood as I type this) some of my symptoms (besides the exhaustion and overall body ache) have subsided. I used to suffer with tachycardia so many times a day I could never even keep track and it really made me feel horrible. I only seem to get an episode if I'm startled (ringing phone really early in the morning, bad dreams, alarm going off, etc.) or from the heat and it goes away rather within minutes. Perhaps I'm just conditioning myself even more?!?! This is a rough lifestyle to maintain if it is what it takes to condition my body, if that is even possible with this condition. It might be that I just haven't had time or allowed myself to crash. My body definitely aches but I am continuing on somehow. And just when I thought I couldn't get go in any more directions my lease ended and my landlord wanted to raise my rent dramatically, so I will be moving into a new place on October 1st. The good part is the place is less than a mile from my mom so I will be able to sleep at my own place and still be there for her the rest of the time. I just dread the thought of packing (I will be making a huge donation to Goodwill to lessen my load), carrying things in the Florida heat, and unpacking! I need some suggestions for energy. Yes, I know sleep would be a good one and I try to get as much of it everytime I can. I haven't touched caffeine in 5 years and I don't plan on starting. I take Klonopin which helps maintain my tachy episodes but it makes me so tired sometimes. However, I don't think it would be a good idea to stop taking it. I've heard about Provigil that helps some people. What are the side effects? Any other suggestions? I don't want to start anything where the side effects are going to put me out of commission. For the most part, I am very happy with all that I have been able to maintain in the past month. It's really a juggling act at times. However, I don't know how long this will last and if there is anything that might be able to help me I'm willing to try. If you managed to read all of this, thanks for listening and any suggestions would be appreciated.

Just when you think you've heard it all..

I'm a very active dreamer. Sometimes nightmares, most of the time just really long dreams and I wake up feeling like I was just a part of a very weird movie. If they are real intense or nightmares I usually wake up surging with a pounding and fast heart rate. It usually goes away once I wake up more and drink some water. I definitely feel like it takes more out of me. Even when I don't wake up from a dream, I feel like I didn't get a restful amount of sleep because my mind was running all night long. You definitely aren't alone! It wouldn't hurt to bring it up to a doctor.

The care that you received sounds amazing! I am very happy to hear Ivabradine is no longer in studies and has been officially released. When I was diagnosed at Mayo-Rochester I was told about the study going on with Ivabradine and how it would probably really help me as I can not take beta blockers because I have asthma or handle practically any of the typical POTS meds. Mayo-Rochester tried to get me in the study but back then I was in quite the POTShole and the idea of traveling overseas just wasn't too appealing. I am extremely skeptical about the timeframe it will take for Ivabradine to be released in the United States, IF it ever gets released. Sadly, the doctors explained their reasons of why they did not think it would be released here - mainly, pharmacetical companies wouldn't be interested because it wouldn't make them enough money. (I'll save my rant on this topic for another time and place.) Now I know people from all over the world come to places like Mayo in the United States or even to see Dr. Grubb but does anyone know how it works for people going to the UK for medical care? I knew what the laws were pre-September 11th regarding bringing meds back into the country but I'm sure they have changed and I'm out of the loop. If anyone has any idea or personal experience with doing this, I'd love to hear it!

Persephone, I heard Ivabradine is supposed to be great. When I was diagnosed at Mayo-Rochester I was told this would be a great med for me since I'm allergic to beta blockers. However, it isn't available in the United States. I know you don't get on here much but if you do, how has Ivabradine helped you? Congrats on your scholarship!

Sorry to hear you've had such a rough time! I can only speak for myself but prednisone actually helps improve my POTS symptoms. There has been discussions on prednisone and POTS many times before so you might want to do a search. Everyone seems to react different to meds here though so maybe you'll find some answers. Best of luck to you.

Hey Staci, I hope your doctor's appointment went well and that you feel better soon. I know how frustrating it feels to be so young and so sick. I agree with what Jacquie wrote, if you are getting this frequently see an ENT. I had my tonsils and adnoids out when I was 15. I've had maybe 2 or 3 sore throats since. Take care and if you need to talk you know how to find me! Alexia

I'm having an endoscopy and colonoscopy on Monday. I'm having an endoscopy to check for a gluten allergy and to see if I have ulcers. My GI wants to do the colonoscopy because I have iron deficinency anemia (even though a gluten allergy would explain this) and says a colonoscopy is important because of the anemia. I tried to talk my way out of it numerous times but she insists that it is important to do. Feeling rather flustered I agreed to it. I'm not worried about the endoscopy. The idea of having a colonoscopy at 23 doesn't thrill me but most of all I'm really worried about the prep. I get what I think is reactive hypoglycemia. Definitely hypoglycemia of some type and I'm worried that what I'm allowed to drink won't keep my glucose levels up. Again, the GI told me not to worry. I will be taking Halflytely as my prep and I'm concerned with my blood pressure dropping from the Halflytely emptying my system. I don't take anything for my blood pressure so this is a big concern for me. My GI didn't have much to say about my concerns regarding this. I am having these procedures done in an outpatient setting at a hosptial so their will be an anesthesiologist there the entire time. I'm not too concerned about my HR/BP the day of the procedure since I will be closely monitored. My big fear is on Sunday during the prep. I did a search and read through some stories but I wanted to know what problems, if any, did anyone encounter during prep. I'm worried about being able to get through it with the hypoglycemia issue and possible blood pressure problems.

Karen, Did you get my PM with the contact info for the other doctors? I typically just see my specialists...endocronologist, cardiologist, and allergist/immunologist. I haven't really had the need for a PCP. I've heard that Dr. Mark Goldstein is really good internist. He shares an office with Dr. Sunil in Bonita Springs. He was the director of internal medicine at the Cleveland Clinic but left to have his own private practice because he didn't agree with Cleveland Clinic's policy of only spending 15 minutes per patient. That's the same reason Dr. Sunil left and Dr. Talano as well, who was the head of cardiology there. Hope that helps. Alexia

If you look under 'Causes' on the main site here: http://potsplace.com/what_causes_pots.htm This is listed as one of the potential causes: Gastric bypass surgery may cause orthostatic intolerance in some individuals.

Karen, I'm going to send you a PM with contact information on Dr. Sunil and Dr. Talano. They are good friends which makes it even better because they consult on my health care. Dr. Sunil is a very patient man and you always see him. The only time he didn't know what to do with me he got me an appointment at Mayo-Rochester a week later and then handled my follow up care. Like I said, he is from Mayo-Rochester so he is very knowledgable. Dr. Talano will spend as long as necessary with you which sometimes results in a long wait in the waiting room but it is worth it because he takes his time with you. Another plus is that he is ALWAYS available by cell phone to you. I haven't had to call him yet but it is comforting to know he is available if I need him. I'm not sure if he still does this, but he used to see patients on Thursday in Bonita Springs at Dr. Sunil's office. Do you see a neuro? I can only recommend who NOT to see in southwest Florida at this point. I'm searching for a good one who understands POTS. Alexia

Request bulkhead seating! It will give you more leg room to move around in. Mayoclinic even gave me a letter to get bulkhead seating when flying. You might want to get a letter from your doctor. Or call the airlines and ask to speak with a supervisor ahead of time and tell them you have a medical condition - explain what happens to you. A supervisor can assign your seat in bulkhead ahead of time. Get up and walk around if you can during your flight. Like everyone else said, increase your fluids even more and extra salty foods. If you wear compression stockings those will be helpful, and use a wheelchair if you are going to have to walk long distances. Personally, I'm a nervous flyer so I always take something before I fly so I'm relaxed the whole trip. I also bring an eyemask to wear. It comes in handy when you want to drown out everyone around you and sleep or relax.

I'm assuming you are referring to Dr. Thompson in Pensacola. I haven't seen him but I've heard really good things about him from others that have seen him. He even has POTS or some form of dysautonomia so he definitely knows what we all go through. If you're up for the the drive, it will probably be worth it to see him. If I remember correctly you will need a referral from your doc to get an appointment.

I'm glad to hear I'm not the only one who had a crazy experience on Clonidine. When I was first diagnosed with POTS at Mayo-Rochester, they had me take it over the weekend. I had a hard time explaining to them the crazy ways it made me feel. It gave me really bad head rushes as well and they at least understood that and took me off of it. Maybe if you stick it out those side effects will go away. The head rushes were just way too strong for me to continue taking it.