RockiesGirl

I am trying to offer thoughts of encouragement to you..... ;o) Just some thoughts/ideas: Assuming you are in the states or somewhere it is Spring now... Go sit in a chair (outside if you can manage, if not, by an open window) and relish in the beauty of our world. Listen to the birds, watch the trees sway back and forth, Look up and view the clouds...try to make out the shapes and watch as the clouds change into different shapes. Just let yourself/your mind go, float into a world of beauty for a little while. If it is better at night (I did this last night) set up a chair or a cot for that matter, or even a sleeping bag...have someone help you ;o) Go sit under the stars, identify O'Ryan's belt, the little dipper, the big dipper and whatever else you can find. Watch the planes as they pass through the night...wondering where all the people are off to. Imagine yourself on that plane, just as happy as you can be, feeling well, with your family.... Watch the clouds as they distort the star spangled sky. Listen to the sounds of the night... Lastly, if you are having a day where you can't even do this... Turn on National Geographic Channel/ Animal Planet or plug into the internet and view... Watch the beauty through the camera lense or just let it be it the background while you drift in and out of sleep. Try to clear your mind of the bad (I know sometimes it is easier said than done) Center on your beliefs, let them hold you, send the bad to them to take care of for a little while... Relish in the beauty of YOU!!! Your good memories, your loves, your children...etc. etc. Cry if you need to, but hold the beauty of our World close to your heart as you do. Hope this helps, it is what I try to do when I've reached the yuck day... And a lot of times it seems to Help!!! Also, sometimes my kids come out or come to my bed and sit with me... Take care and chin up ;o)

I don't know if 'pushy' is the correct word? I do not think you are being pushy. I think that a large percentage of us would not have a diagnosis if we didn't ask, re-phrase and send the Docs in another direction or thought pattern. The doctors are just like the rest of the population, some nice & willing listen/ help. Some who are thinking about their plans after work & just want to get through our appts. and some who had a huge problem etc that they are dealing with. Or maybe they are just not very nice, receptive people, I know I seem to run into A LOT of them. I personally think that you need to find the Doctor that fits with you Listens to you, has time for you etc. I also know that it is VERY difficult to explain this syndrome to friends/relatives etc. As with me, it makes one question oneself... YOU know your body and if you are still not feeling better...there is something more wrong....seek answers with a stiff upper lip ;o) My Best to you with prayers, hugs and thoughts!!

So happy for you!!! Congrats and am very happy to hear that you are enjoying your life again! Take care & tell that body of yours to keep up the Good Work ;o)

1. Yes, My BP can be low and high. But I have been also diagnosed with adrenergic autonomic polyneuropathy and cholinergic autonomic neuropathy 2. Yes My HR increases every single time, but sometimes it is right away and sometimes it is like 10-15 min. later. But it also happens when I sit up. 3. I have noticed my HR increases when I eat, but what is really bothersome for me is that sometimes the food or drink just won't go down. It gets kinda stuck & then of course my HR raises because I am worried about it. Sometimes as the food moves down to my stomach it hurts my chest. 4. Yes, but I have noticed that during these times the BP is very narrow. Like 84/79. 5. I feel like I'm tired but wired...if that makes sense. It is not usually because I feel awful, but sometimes my Heart is racing as well??? Other times I can sleep for 18 hours straight and probably still sleep more. 6. I had my Gall Bladder out and that seemed to help with some of the pain...but I have had pain for probably 20 years. Oddly it has gotten a lot better since I have been put on the Bystolic. 8. I do not know the answer to this question, but generally my Doc has advised me that if it stays over 145 for too long after Meds., I need to go to the ER. Needless to say I try everything possible to get it down

I tryed to take this for 4 days and I was absolutely miserable. Dizzy, nauseated, weird eye problems, dry mouth, heart rate fluctuations down to 34 bpm or up to 148bpm, exhausted & basically from the moment I woke up 'til the moment I went to sleep was spent Supine...hard to even go the restroom. I've spent so much time on the couch or in the bed these last few years I told my Doc that I wasn't willing to give up another 6-8 weeks of my life to 'see' if a drug might work or not. But for some I see that if you stick with it, it helps! Good luck!!

I have suffered with Migraines for years. Before I recvd. my diagnosis in Jan. I was getting one at least 2-3 times a week. Since being put on the Meds (Beta-blocker) I have only had about 4-5, so about 1 a month since then. Although, now that I think about it, when I went off my Meds for some testing they were back. I think it has to do with our BP and heart rate. When I get them I can feel my heart rate in my tummy, head, feet etc. & I know how much they suck. I'm sorry you are feeling this way A couple of suggestions.....Gatorade, Coconut water, a warm bath or a heating pad against my neck helped a bit. Also a little Peppermint oil, Lavender oil mixed with Olive Oil on my temples & just below my nasal passages. Sometimes these help, but sometimes nothing does.... Hope maybe it will for you ;o)

First of all, I would like to offer you what little support I can via these typed words... chin up please. Secondly, I would try to rent a Van or a small RV (like others have suggested) so that you can make a bed of sorts in the back of the car. That way it will be easier for you to nap in between visits. It sounds like your hubby has been supportive of you and I understand why you want to make the trip for him... On the in-law front, unfortunately, it might be like talking to a door-knob, but you might want explain the situation. It is important for everyone to have the information. YOU can only lead the horse to water, but you might not be able to make him drink Hope everything works out!!

Per the tests I am a very low sweater as well. Although I used to wake up at least 3 times a week drenched around 3am...one of those wonderful nights I can actually fall asleep by 3am!! Now since I am on a Beta-Blocker these symptoms have lessened. It only happens about 1 time every other week. I went off the beta-blocker for some testing a few weeks ago and the night sweats came back...

In another Post entitled 'Sleep' there were some suggestions there as well. Issie suggested Ashwagandha but I have yet to get out and buy some. I have the same problem as everyone else it seems. Sometimes I can sleep for hours on end and then others I am staring at the ceiling to 3-4am. Here's to more restful sleep for all of us

Wow- what a GREAT topic. I will bring the make-believe/magic pill that helps all of us to be able to enjoy the items we haven't been able to eat or drink in forever. We can't over-indulge mind you but just a couple of hours of tasting without consequences

Avias1 - Oh my goodness- what great advise you have given us!! Thanks so very much!!! I live in Denver and I never knew what the weird feelings were upon flying... I thought everyone had them or that I was just overly 'afraid' of flying...mostly take offs and landings. All of these Posts make sense now ;o) I haven't been 'cleared' for flying yet but there are talks about going to the Mayo in Scottsdale between my Docs.... The information you've shared makes me feel more confident Again, THANK YOU!!!

I am almost exactly like you. Highest ever recorded 158/136. But I recently went to the Grocery the other day to pick up my prescriptions and almost passed-out while waiting in line Decided to wait & take my vitals at the industrial BP machine. It kept erroring out and would not show my pulse, but my BP was 84/79. Then the Crazy thing wouldn't release my Arm....The Pharmacist had to come over. He had me retake my BP 3 times and all of the readings were really narrow and it never read my pulse?? He gave the 'look' and recommended I stop at the emergency room on the way home. LOL! When I was able to get my prescription I explained what I have and he was so very kind, but still insisting I should stop by the ER.

I am the opposite and am affected when I look up/ head is tilted up. But I might note that I also have trouble with dizziness etc at the salon. I am still on the road to figuring everything out as well.

Thanks Kluesyk for this Post and thanks to everyone who replied!!! Your knowledge is very much appreciated Klueayk...keep your chin up!! Only You know what is going on in your body. Keep the faith and try to find someone who will listen to you, please. I'm sorry you are not feeling well but hang in there. If you need someone to just talk, or PM I am always available.

Oh goodness do I feel you. On another post I described my psuedo MRI appt. this morning. It is sooooo Frustrating!!! I think I would be fine if someone would just do the tests to figure out what the heck is wrong. Even if they didn't have an answer, at least we have done the tests and confirmed. Now I feel like we are just putting a Band-Aid over the problem with the MEDS. that work only sometimes. Just wanted you to know that you are not alone and hopefully someday soon we can both get some answers. Hang in there and I'm sorry (don't know if it helps)

I had my blood tested for allergies and while I am not Gluten intolerant, I am allergic to Wheat. Hence, almost everything has wheat in it and I eat a gluten free diet. Don't know if this helps anyone So there are many facets to this puzzle.

Thanks so much for your reply!!! I guess I'll start the MCAD journey next. Who did you see that diagnosed your MCAD? I am soooo very frustrated!!! Arrrrgggghhhh!!! I know a lot of us are frustrated but I just wanted to vent a little. I went to my Neurologist 11 days ago and they scheduled me for an MRI. Mind you, I have not had an MRI or CT scan of anything above my stomach before ever. The MRI office called today and said they have me scheduled for a neck MRI.... I said "what about my head?" They say, "well, what about your head?" AAAAArrrrggggghhhhhh..... I say "well I have been fainting quite a bit and both hospitals said they also should look at my head." They say, "just a minute, Mam." Leave me on hold forever and finally come back on the line. "I don't know why we didn't schedule your head as well...the imaging Doc says we need to. We'll call you back." I just feel like the idiots are leading the idiots...seriously!! All any of the Docs seem to wanna do is put me on Meds. Thanks for letting me vent and I hope you are doing ok today. It is gloomy here in CO where I live. Looking forward to a little bit of spring if it would ever stay...

Yay!!! Congrats!!!

Ok...yesterday after getting out of the bathtub (te only time I am ever warm) I almost slipped in the water on the floor. I caught myself with my wrist on the door jamb and stopped my fall. It hurt/stung for a few seconds, but then I thought nothing about it. A couple of minutes later it was itching seriously, red and raised. It continued to itch for 10-15 minutes. What's up with this? Instead of Pain...Itchiness?? Today it is just a little swollen...no more itchy but bruised.

Welcome to the site!! Sorry to hear you are not feeling well, but at least you are in good company here I do not have any answers to your questions unfortunately but I am wondering how long it took for you to get into to see Dr. Goodman? Can you relate your experience at the Mayo or talk about it? Hope your symptoms improve now that you have a diangnosis ;o) TAke care and all the best to you!!

Peace to you as well!! And glad you made the decision you did...sounds like it was time

I am a business owner in the finance world-- getting people homes and helping them with their refinances for the past 15 years. At one point I had 35 employees....it WAS beyond stressful. Worked from 7am to midnight alot of days. For me, I take a lot of pride and really care about other people's/customers situations. I put myself in their shoes and try to be very careful about explaining everything and getting people into the best product for them. When something goes wrong with my customers and/or employees, I take it personally and do my best to fix it. Now I am lucky to have a small shop with only 4 employees and I work from Home mostly. I Thank the Dear Lord above for these circumstances since the onset of my illness. If it had been a few years earlier, I would have lost everything. But I definately think STRESS played a big role in my nervous system!!!

I LOVE Coconut Water!! I started to gain weight with all of the Gatorade I was drinking and I did not want sugar substitutes so I happened onto this. It is really hydrating, full of nutrition and it tastes pleasant. Sometimes I mix it with other juices as well. No wonder it can be used for Blood Plasma in an emergency....LOTS of good vitamins etc.

My health was pretty good until all of this started. I mean, I couldn't complain. I have had GI issues since the birth of my children (I started young at 18). Always chalked it up to a bad belly ;o) Tried to fix it myself. Stopped eating dairy & it helped tremendously for a while; then stopped eating any kind of meat or fried food except fish. Seemed to help again for a while. I have ALWAYS been excercise intolerant.... people thought I was a complete wimp. My own children make fun of me I was diagnosed with Cervical/Uterine Cancer at 35 and had to have a hysterectomy. The weird thing was prior to being diagnosed I had this Fever that would not go away. I had it for 7 months. Sometimes it would get a little better but sometimes it was over 102. On the day of my surgery 99.2. My temp always runs low but the surgery was necessary obviously. Low Grade Fever continued after surgery until 6 weeks after ended up in the ER with temp of 103.6. I had an abcess inside on my New Cervical Cuff. (sp) Anyhow, 7 days of intense antibiotics and a 7 day stay in the hospital and finally things were a little better. Still had the low grade fever and sometimes it rears it's head to this day. Over the next 1-2 years my GI issues intensified. It was found that my Gall Bladder was bad. During one of the Gall Bladder testings they gave me morphine which we now know I am severely allergic to. Throat started to close, HR went through the roof, couldn't breath, hives all over my body and huge ones at the IV site. They had to bring in the crash cart because my heart stopped. Don't remember much of it...but the symptoms to a lesser degree w/o the hives are what I get now. The Gall Bladder came out a few weeks later. And then the POTS symptoms seemed to start and progressively get worse. And here I am at 39

Welcome !!! Unfortunately you might note that a lot of us have dealt with Doctors who did not listen and treated us poorly. It's part of the long road to diagnosis. I'm so glad you found us!! There are a lot of supportive people on this site and I hope you can find some of the answers you seek. Take care and enjoy your summer