mom4cem

I take zyrtec and singulair and take intal(inhaler)...it is a cromlyn sodium type, like nasalcrom for the nose. So it is not for acute attacks but you can use it daily, has no side effects and hopefully help to prevent the allergens from irritating the breathing airways. The singulair helps to open my chest a bit and I have had no side effect from that plus it is also used as an antihistamine, and zyrtec is an antihistamine too. I use saline nasal spray and also like this natural nasal spray, it is a pump gel, you pump it in your nose and I notice relief in about a 1/2 hour. Now if I could only remember the name. I think it is zicam nasal spray. Can buy it otc,,no medicine in it.

Glad to hear it was a positive experience. Rest up and enjoy being home

I feel the same way. I hate being alone but on the other hand I don't want to be someone else's burden, like my family. When my hubby is home on the weekends, he usually only goes out for an hour or two for the kids soccer/baseball games but I know I can reach him. When he is at work it is a little harder for me to reach him. My parents are older and I don't want to frighten them or make them feel they have to look out for me so I tend to only go there with my little guy and use him as an excuse. Otherwise I carry my cell phone(what did we ever do without them?), and have the portable from room to room. I used to wonder what would happen if I was home, locked in my house and something happened? How would they get in? Who would know? Tis true though, if it is going to happen it is going to happen. Just don't want that to be while I am driving(Have had that before with tachy episodes) or out in stores(can't imagine having to lie down on the floor and wait an hour for it to pass) or anywhere. Yet I still try to force myself. This was not much help, but just wanted you to know I feel the same way. BTW, 40 here and a big baby!!!!

The dr. business, it is tough to get coordination. Have you asked Dr. Gliden if she knows of or can recommend someone near you to coordinate your care, who at least may be a bit familiar with dysautonomia and she can converse and consult with for your care? I agree about the insulin surges. I just went to see a former dr of anesthesioligist turned doctor of D.O. He spent over two hourse with me, I took an extensive questionairre, with background history, symptoms etc., I had my hubby sit in with this consult. He went over everything, told me what he thought was going on, what he thinks will help. His first thing when I originally called him on the phone to set up an appt., he right away said that it was a sympathetic overload, adrenal crisis, probable hypoglycemia and hormonal imbalances. The questionnaire proved to show the same. I went for some blood work that was not performed by my primary. He recommended licorice root, some adrenal support support, vit c, vit d, and a few other supplements. Many of these things he said would not be long term. I have to follow a hypoglycemic protocol, add more protein, liberally add celtic sea salt. Point of the story....maybe there is another type of dr. out there who is familiar and can offer help. A d.o. does residency in internal medicine can write rx, etc.

Hi, My heart pounds much of the time and my rate can be normal. The fast rate and palpitations can be two entirely different things. I was at a block party the other day, drinking my water, watching what I eat and I swore my heart was beating fast because I could feel every beat. It was in the 70's. Even on the beta blocker I still get that. The weather can play a part in that also. Hope it has calmed down some for you.

Good to hear from you. I really hope this works out well for you. Looking forward to reading about your progress

Have you looked into the Avon? They have DEET free bug spray or lotion with bug repellant.

I can only ditto what everyone else said.... Anytime, pm me, e-mail, whatever. We really are all here!!!

I also think there is a gray area. That is the hardest to be in. When you don't fit or meet the strict criteria set up for a diagnosis then they don't know what to do with you. I certainly think that it is still very possible that pots is what you have. Dysautonomia symptoms vary greatly. Don't give up. I would speak to the cardio directly and see what she feels the next step should be for you. Good luck.

I think it was left on trying to find a place. I'm still willing. My family was also going to come in and go to a couple places while I would be at the get together. I don't like going in by myself now that I feel this way.

I e-mailed Dr. Stewart for recommendation on anyone else in NY he would recommend for those who can't see him since he is pediatric. He e-mailed back within a day. Try e-mailing also for any questions.

I have posted about ssri also. I started lexapro. I had a terrible time with even 5mg.I was getting lots of surges on and off of it. I take 2.5mg...my Dr. even gave me a script for the liquid. He says if the infantile dose works...take it!... I think it has helped a bit. Who knows I may even be able to go up on the dose.

HI, I'm always being checked out by my cardio so I know for me it is not a cardiac issue even though it feels like it is. I notice that it is worse with the heat and humidity. Is it very hot and humid by you also? Get it checked to be sure...

Wow. I have never heard of that one. I would have said no also. I agree, it may be time, if you have not done so already, seek out someone like Dr. Grubb to take a look at everything going on, run tests and hopefully come up with a game plan. I wish you all the best

Sitting to standing about 120's. Then it can level off to 115. I also get episodes just sitting and it can go from 70's or 80's to 120's. These have been caught on a event loop monitor as sinus tachy. The highest I think I had was 160 and that was while sitting my rate was 120 then I got up it went to 160 then to the 130's. My cardio has said it is sinus tachy. My b/p is usually 110/70 sometimes up to 120/80 and other times lower,,all while sitting. Standing I don't know. I have been told it drops but I've been on a beta blocker for years now. My rates can also stay sustained for a while before going down, while still showing sinus tachy and slowly goes back. Cardio says heart is fine, it is some type of autonomic dysregulation. I take atenelol 12.5 2x a day. My rate can go into the 60's or 70's or 80's with it. On a bad day it stays in the 90's (sitting) no rhyme or reason. Good luck with the career!

My echos in the beginning said mvp. After a few years as the criteria changed the echos started to read "suggestive of but does not meet strict criteria". I know they can usually see a bit of the prolapse in one view but not in the other. I have trace mr/tr and premedicate whether the current dr I see says I should or not because of the trace finding. I also had read that trace regurgitation in almost all the valves, mr/tr/pulmonic are findings that can be seen in normals. That if you pulled X amount of people off of the streets and did an echo that a good percentage of them have a trace leakage. I understand that the equipment is so sensitive it picks up everything. Does it not also matter if you do a regular echo vs. a stress echo where you one is done before exercising and one after? Would that not pick up much more on people rather than just a regular echo. Anyway, I was told that many people with MVP have the imbalance in their nervous system. I was always told it is not the prolapse that cause the symptoms it is the nervous system/dysautonomia. It is almost like a marker. But plenty of people can have dysautonomia and not mvp and vice versa.

I have MVP and some form of dysautonomia. I don't fit the pots criteria exactly but have many of the symptoms so I consider it myself with some type of autonmic dysregulation. It will be interesting to see what the good Dr. comes up with

Please know you are in my thoughts and prayers. It is a tough choice you are up against, but I am sure you will find the right one.

Hi, That sounds pretty good. I mean they are supposed to help lower b/p and also reduce the heartrate. I don't notice to much of a drop in b/p when I take my blocker, I take tenormin but sometimes my hr dips to the 60's, but that changes throughout the day. If it bothers you about your rate being low, ask your doc about splitting the dosage into a.m. and p.m. I do that. I hope this is the start of something that will help you.

Hi Dizzy, Now that is something I have regardless of the weather. It is hot and humid here also, about 90 but I can feel like this in the a/c too. I don't have to be outside so I can't say it happens because I am outside. My hands and feet sweat and my jaw/teeth chatter. I can get that several times a day. I usually get tachy with it also. BUT, if it does get chilly while I am outside, you would think I was freezing to death, I really start to shake and chatter. Sorry I don't have anything better to offer, but to say I hear ya, and you are not alone.

Glad to hear it went well and that you will be seeing someone who is at least familiar with POTS and speaks to Dr. Grubb... I hope it all goes well on Thurs. Please let us know!!

Glad you had fun and were able to see your family have fun. Hope you feel better soon.

Glad you were able to go out and enjoy. I notice that you have a re-entry tach, can you tell the difference? Was wondering if that is what it could have been or,you know between standing all night, even with all the water, you can pay for it later.

Hi, I started lexapro 2.5mg...I am miserable with side effects. I was wake all last night, jittery, having rushes, palpitations-early beats-, feeling manic almost with the worst fuzzy head. I don't think I can go through this. I just don't feel right. I've been taking it a few days. I am very sensitive meds. I only take a tiny bit of beta blocker 12.5 2x day because I can't take the side effects. So my heart rate is low with both the ssri and beta. My hands are all sweaty,,well to be fair they were before, but nothing has changed and I felt nothing but extra heartbeats and rushes all night. Does anyone take an ssri any other way? Like every other day? I have not read anything on it, and it probably would not do any good taking it that way, but I wonder if some of us could build up to much of it taking it every day. Just a thought. I'm wondering if I can take my klonopin with this? My cardio is out of town until Weds. The dr. who is covering is another private dr who won't know anything about me. Maybe I should page my dr. Thanks for listening.

I agree with Tammy. You might want to have something on hand for the tachy. The rebound effect can happen, though I don't know how long it would last. Is she putting you on something else?