Mydoggielovesme2

Have had to take supplements for last several years. As long as I take 5000 IU of D-3 a day, I can keep it in the normal range. Also get sun when I can.

My first endoscopy was done at mayo. I was told I would be " out" and not feel a thing. Unfortunately that was not the case. Because of BP issues and tachycardia issues I too was held down, because of the pain and gag reflex response. The thing was they knew before hand, but did not tell me. Truthfully though, I'm glad I did not know what was coming, because I might have backed out and I REALLY needed the test. Second endoscopy a few months later, I was able to prepare more. Drank 93 oz of water the hrs leading up to midnight when I had to be NPO. Then 18 gage needle IV fluids as soon as I got to hosp. Was able to be completely out for procedure, with only slight tachycardia. Soooooo much better!

Hi Rachel, when I first started the diet in April, I lost 10 lbs in two weeks. This was not a good time for me though. I had just found out I had celiac disease, and was almost afraid to eat. You also start to detox--that's what it felt like anyway. Now that I have been GF for 7 1/2 months my weight is very stable. I am a very healthily eater though. A word of caution, many prepared GF foods are high in sugars. I think they substitute sugar for the gluten. Betty Hagman has some great GF cookbooks. Also the Gluten free grocery guide is a big help with shopping. I just posted on another thread about checking for gluten in medications. Glutenfreedrugs.com is a fantastic help. Most Drs don't know about the gluten in meds. Hope this next step helps for you and your family. Shona

Hi All, just thought I would mention a couple of things that really help to transition to GF. A web sight called glutenfreedrugs.com is invaluable. It is amazing how many meds have gluten in them! Mayo suggested this sight, and I am so glad they did. My GP argued with me about gluten in meds. Said he had " never heard oh such a thing". So glad I was able to show him....... Also a book called the " Gluten Free Grocery Guide" by triumphdining.com. This makes shopping for groceries so much easier.

Cold is my enemy! I feel so much worse during the winter. Many more flares from Nov-March. Barometric pressure especially Low pressures, gives me migraines, brain fog to the extreme, lower BPs, sluggishness ect ect.

Welcome Angel, I was diagnosed with celiac in March while at Mayo clinic. Going on a strict GF diet was been one of the best things for not only GI symptoms but also many POTS problems. I started to notice changes with GI symptoms right away, but it took about two months for real changes to start in other areas. If you look at previous posts, there has been other conversations about this. I wish you all the best. If you have any questions feel free to PM me. Shona

Just a few pointers for those going gluten free. First of all, PLEASE, give yourselves time to adjust. It is a very daunting task, and can get pretty overwhelming, but is so worth all the effort. Second, gluten is in sooooooo many things, from meds, to the glue on stamps, so be diligent in your research. A great web sight for meds is: glutenfreedrugs.com. A GREAT book to help with shopping is: The Gluten Free grocery guide by Triumph Dining. If anyone has any questions, feel free to PM me. Shona

Tested positive through biopsies, no DNA. Have been gluten free for 7 months now. Probably one of the best things for my POTS symptoms. GI problems resolving, migraines 50% better, brain fog better, more energy. Just had follow up endoscopy a few wks ago, and Dr were impressed with how well my stomach has healed itself. Going gluten free was not easy. In fact it was down right hard. But the results has been worth it.

Thank you, I will look into this. {:-)

Hi All, Hoping you are having a nice evening. Just wondering if any of you have had long term shingles? I have had mine since July 17th. The worst was the first five weeks, but I just can't get them to go away. Sometime they are inside, then other times outside on the skin. Of courses my GP can't figure out what's going on. Took all the prescribed meds, now wondering if there is anything natural to try? I refuse to take anymore Vicodin, just using Tylenol. Any suggestion would be greatly appreciated. Thanks

Being a type A personality, and working 8-12 hr days, plus volunteering, I completely understand the hesitation to sign up for disability. Its a big decision. But when the Drs encourage it, you really need to seriously consider it. Stress is such a big factor in our health and working only added more stress. Especially when you can't control what your body does. I also realize pride is a factor. Not only for us, but for our spouses. But please remember, just because you can not work, you are no less a person. You will just be getting an income in a different way, while having more time to work on YOU! Sure it takes some getting used to, and there will have to be some sacrifices, but in the long run, it is worth it. Remember too, it also takes quite some time to go through the process of signing up, ect. So the soon you get started the better.

Had a horrible reaction to gadolinium the last time I had an MRI. Just as others discribed, felt like fire being shot into me. Heart rate went through the roof. Problem was, I couldn't get the attention of anyone, because of the noise of the machine. Was not until they pulled me out and I was incoherent that they realized there was a problem. Fortunately I had dosed with antihistamines before hand, or may have been much worse. So just be cautious, we need these tests, but have to be aware our bodies not like most. Glad things went well for you LMG! Hope you get good test results.

Hi All, I have been reading with interest this thread since it started. But I couldn't help but jump in on this gluten bit. I was diagnosed with celiac in march, and have been gluten free since April. It really is not as hard as you may think. And the benifits so outweigh the hassles of being strict with your self! My family is also now gluten free and feeling so much better also, even though they do not have celiac. Please consider this as something to help your body heal itself. Gluten is good for no one.

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Midodrine did nothing for me accept give me horrible side effects. Years later was diagnosed with hyper pots. Guess that's why.

Coconut oil is all I can use as a moisturizer. I too had a lot of skin issues, rashes ect. Always allergic to whatever dermatologist prescribed. Sooooo glad someone on here told me about the coconut oil. It's works wonderfully.

I wish so much when I purchased mine few yrs ago I would have know more about what was going on with me. I would have gotten one like yours. I'm so happy things went well on your first outing! Hope there are many more to come.

Way to go! It took a bit of getting used to, but I am so glad I have my wheelchair. The only advice I would offer is, be careful not to sit too long. For me any type of sitting(without my legs being elevated)tends to be a problem. Fortunately I can get up and push my chair for a couple of minutes, before I get to dizzy. Hope you have a great time. Remember to keep hydrated.

Alex, I'm so glad your perseverance finally paid off! I really hope you get the desired results. It been a long time coming. Hoping you feel better with every passing day. Wishing you strength and comfort. Shona

Welcome Kelsey, so glad you found us. Fainting was my first symptom also. Finding a Dr that knows how to treat POTS will be a crucial step in getting some control of your life back. I'm glad to hear you are already looking in that direction. Hang in there. Shona

My experience was with Mayo in Az. It took me three months for an appt. they asked me to arrange to stay at least one wk.( they actually prefer if you can make it open ended) I had test each and every day, all day long. If I could have stayed longer, I would have had more tests. It was the best medicinal experience I have ever had, and would recommend it to anyone able to go. Wishing you the best as you continue on this crazy journey.

Well still no call from Drs. But I've been sleeping last few hrs and BP and hr seem to have settled down. The person that did my acupuncture is also my chiropractor. I have been seeing her for a couple of years now. She was not familiar with dysautonomia, but has been will to learn along the way. My GP is not going to be happy. He does not like chiropractic so I'm sure he won't like acupuncture. But then he is not much help with pots. So it's a wash......

Thanks, have a call into both. If I don't get to feeling better soon may go ER

I use a netti pot for sinus. But I will have to look up this inhaler for more info.

Just wanted to let everyone know how things are going. I have had the shingles for a couple of weeks now. Been on lots of meds. Anyway I decided to try acupuncture yesterday, and wow, did it make a difference. I have not had to take any pain meds since going. Before starting she asked me what my pain level was, and I said 8. And that was on Vicodin. Today it's maybe a 2. I truly would never have believed acupuncture could work so well. That's the good news. Now the bad. A few hrs after the treatment, I started getting very upset to my stomach, sweaty, chest pain. Thought I was going to pass out. My granddaughter grabbed my BP machine for me. It was 74/42 p38 and irregular. About one min later it was 106/77 p109 and irregular. For the next hr it kept bouncing around like this. Today it's its usual low, but I feel so weak. Not able to eat, still some chest pain. Not sure what to think. Any ideas??