labas_2u@shaw.ca

Hi Jaquirouin: Sorry I can't help you honey.... but I just wanted you to know that I read your posts and wish you the best of luck in finding one. Have you scanned the Net? That is the only idea I have at all.. Thinking about you and I hope you let us know how you made out. All the best Maggs

Hi Amber I don't know why this happens either Sometimes (not too often) We will go out to friends and I feel fine and have a great time (with limitations) Othertimes, I am completely wiped out just trying to get ready to go out You can always find me at a get-together.....I'm the one sitting down in the most comfortable chair with salty chips/peanuts close to the nearest bathroom I still try to get out and socialize both for me and my husband but I never really feel like it. However, once I get there I am usually glad I did. I think getting the migraine treated early is important especially if you can't keep anything down. That is only going to bring on more symptoms that are harder and will take longer to bring back under control. Maggs

All the best Rebecca!! I'll be thinking of you Maggs

Thanks again everyone for the advice and support..... I printed off the recipe.... sounds great.... Maggs I learn more from this group........

Thanks again everyone. We have no autonomic specialist here. The nearest one is 12 hours away! We have one hospital here that has a walk-in-clinic, so when I went to get my follow-up blood work today, I popped into the clinic to get the results and see the doctor there. (my doctor is away for a week) My sodium dropped again but I had a really good talk with the doctor there who ran some more tests ( urine electrolyte test for one ) The electrolytes are not being lost in my urine so he told me to keep drinking fluids as I was borderline dehydrated! He explained that electrolyte loss from drinking too much would show up in the urine, as it is being flushed out (good to know!) He also recommended the pedialyte and told me to take salt, not withhold it. He couldn't explain the inflammation showing up on the CT scan (It will probably be sent out) but wants me to check in with him through the week if I don't feel any better..... I feel so much better having a good back up who makes sense! Thanks for the advice and the tips...I felt better too knowing you are out there! Maggs

Wishing you all the best Jan... Sending hugs and prayers your way... Maggs

Hi Jacquie Sorry I can't help with your problem as I have no solutions or even advise for you but, just wanted you to know I know how you feel and hope this passes soon.... If this fatique seems worse than what you have normally experienced in the past, you should call your doctor and check in with him/her. Perhaps they might (knowing your medical history) have some ideas.... Wishing you the best... Hang in there, Maggs

Hi everyone I just got out of the hospital yesterday and I am totally confused with what to do..... First : I take 50 mg Atenolol, 10 mg Altace and (was) taking hydroclorothiazide..... My blood pressure goes through the roof sometimes (along with severe tachy and resting heart rate of 120 bpm ) and this combination after many trials is the only combination that works. Second: I have a history of electrolyte imbalance..mainly sodium and cloride. Third: developed right sided pain (again...we discussed this on another thread) Had ANOTHER ultrasound done with this showing changes in the right kidney and ureter......Booked for CT scan. Thursday, I felt just rotten, pain worse in side, migraine, tachy with irregular heartbeats and vomited. By evening I had to go to the ER because BP started to rise too making me feel really ill. Had blood work done stat.....results: elevated white count: Red blood count down: low sodium: low cloride: and a potassium level of 2.7 The Doc in ER was great....ordered a the CT scan right away....he thought is was an inflammation of the kidney/adrenal gland which was forcing BP up and dropping the electrolytes down (also would account for the elevated white count) I was started on IV electrolytes right away, admitted to the hospital and the internalist-on-call was callled in.....this is where it gets really weird..... The CT scan showed quite a bit of inflammation in my right kidney and ureter....The internalist thought told me I had passed kidney stones. He also said that my electrolytes dropped because of the hydroclorothiazide and stopped it. (I know this can happen) He told me I drank TOO much liquids and cut back because this was lowing my electrolytes (never minded I have a history of dehydration) He also told me to cut down on salt because it was raising my blood pressure....... Does any of this make sense??? I still don't feel good, have quite a bit of diarrhea and still have the pain in my side...... My BP has now dropped to 96/62 and I feel crappy Any ideas/advice??? I am open to anything right about now!!! You guys have been great with info and advice in the past and now I really need some help with understanding this and trying to help myself.

How much longer do you have left before they stop paying? Is it possible that you can make arrangements with your doctor to receive it in an ER?? I would think that after a couple of trips to the ER for the bloodwork and to receive a specific medication that the insurance company would rethink their decision...... Good luck!! Maggs

Name: Maryte (Maggie or Maggs) Age: 47 I live in a small community in Northern Ontario, Canada Diagnosis: Tachycardia with chest pain (SVT, diffuse ST, palpitations etc) labile hypertension, IBS, bladder problems, migraines, vision and lung problems, Von Willibrand's (aquired), TMJ, Impaired Glucose Intolerance, Impingement of both ulnar nerves, Blood pooling and flushing, Straightened of C-Spine, heat and excercise intolerance......and more First Symptoms: Twin Pregnancy 22 Years ago ... At worst......flare up...don't want to go there.... At best....tired Rx that did not work......numerous (multiple med allergies) Rx that works... Atenolol (just barely) Altace and Hydrocholorozide

Hi Steph, I am not familiar with American Insurances at all but I do work (clerical) in a hospital. I am sure if the insurance company knew that you were saving them money by being on a medication that works vs. more trips to doctors/Er's......won't they want to continue the medication???? Just a thought..... Maggs

Maggs, it wouldn't hurt to have the EP study done to make sure that you don't have any accessory pathways happening that could be contributing to your condition. It would give you more info about your situation at any rate, and you don't have to agree to have the ablation done. If an ablation is performed to eliminate an accessory pathway, that should not have any negative effects on your POTS. It will just eliminate that particular pathway which shouldn't be present. Try and do some online research, and have a look through some of the old posts on this topic for more info. Thanks Laura; I never thought in terms of separating the two procedures. I was just thinking of EP/Ablation as one. I see my cardio tomorrow. For sure I'll do the research ASAP and be ready with more (better) questions. Any websites recomended?? Thanks

I am really glad this topic came up... My cardio wants to set me up for EP studies and ablation.... Don't know what to do I take 50 mg Atenolol for the tachy but it does always work. although it has helped with my resting tachy which was 110 before the Atenolol. However, my BP is all over the place usually very high (highest 210/134) Would I be a 'better' candidate for ablation?? Really would like to know because my cardio is pushing it. Maggs

Thanks everyone! Another quick question(s) For those with repeat pneumonia/pleurisy/bronchitis.......do you have an underlying autoimmune disorder or how does this tie in with dysautonomia??? What is the treatment you have found most effective treating it ??? (Especially if you have sensitivity problems with antibiotics) Do you "jump on top of" the chest cold/symptoms each time or wait until diagnosis is confirmed?? Thanks in advance... ps Hi Maggee :0)

Rebecca: No you are not losing your mind. Welcome to the world of Dysautonomia! p.s. sometimes I leave out some letters of words I am writing out at work especially the first letter (?) The people I work with think I have dyslexia! Maggs

Hi Nina! I have had pleurisy too. Thanks, Maggs

No experience in that area but wishing you the best of luck! Maggs

Hi Rebecca.. Yes, I get pneumonia at least once a year. I had the original chest x-ray back in November due to a severe chest cold. But, it wasn't pneumonia at that time. And....yes...... I do smoke. I don't smoke alot and I have quit on and off and know that I really do have to quit for good, but it is really hard. I find smoking helps with stress and dealing with pain at 04:00 in the morning.

Hi Everyone..... I haven't seen alot of posts on lung involvement ( aside from shortness of breath ) and I just wanted to run this one by you because of your combined wealth of information. Just got my chest x-ray results that partially reads.... "There is slight linear shadowing at the left lung base which in unchanged since November 2005. The appearance suggest slight scarring....." Any insight(s)???? I find I learn more from my friends here than any medical professional!! Thanks in advance!

Hi Ariella! I get something quite similar to that, but mine is called 'cataplexy'. It is quite scary.

Great topic!! I've learned alot! This was a subject that I have never discuss with my doctor, and I don't know why I haven't. ...thanks guys! Maggs

Hi Joy and WELCOME! You've come to the right place! We are here for you! Maggs

Thinking of you! I really hope that it all works out, blessings for all three of you coming your way...... Maggs

Hi guys.... Just wondering where the photos are on this site! I keep reading about them being posted, but cannot find them (even under 'search') Maggs

Hey Laura... hang in there! We all have good and bad days, except with POTS it's good and bad 'times'. I know with the warmer weather here, I am having a hard time too. But good times will follow. Wishing you the best and sending a (((((hug))))) from the North. Miss your posts Maggs