Mydoggielovesme2

Thanks Rama, I was wondering about that. Been trying to do research on it this past wk.

Have you been on midodrine yet?

I had to wait about 3 months.

Hi, I too have low BP. I usually run 80/60s during the day, and 70/40s at night. I was on propranolol also, but had to go off of it. In fact I have been on several beta blockers, but have had to discontinue them. I was just at mayo so I can share some of their instructions. of course everyone is different so please use your own judgement. 1.compression thigh high hoses 2.use an abdominal binder 3.large volumes of fluid, 2.5L daily with half of that to contain electrolytes 4.elevate head of bed 4-6inches 5.exercise to strengthen lower limbs and Ab muscles. 6. Initiation of a cardiovascular exercise regimen.(recumbent bike)

I know these are pretty basic things for POTS patients. But I hate how I feel with the low BP. It is so hard to function, think ect. So I keep hoping that these will help.

My feet always feel like ice. It can be 100 degrees and they never seem to warm up. On my really bad days my hands and oddly enough my nose get the same way. I have hyperaderngic pots.

I too have more problems on my right side. Tremors, neck pain, shoulder problems, ect. When I thought I was having a stroke, I went blind in my rt eye, (temporary) could not move my arm or leg on the rt. could not speak either.

Get a disability lawyer from the start, and plan on it taking a long time. There is no out of pocket expense for this type of lawyer. They get a percentage at the end of the process, but it is well worth it. Just make sure to research for a good one. Start gathering your med records. You will need EVERYTHING! Don't get discouraged. There will be tons of paperwork, tons of questions to answer ect. Remember, this is a government program, and they don't left there money go easily. Best of luck.

My husband and I are raising our granddaughter. She was 6 when she came to live with us. I had only been sick 9 months. Now here she is 11 soon to be 12 (going on 20 haha) so all she as know is me being sick. One of the things we do together is crafting. She take guitar lessons over Skype. We do puzzles. She has friends over every once in a while. I guess for me, it's not about what she is missing out on, or what I can't do, but, where would she be if we weren't here for her. So many kids don't have parents that give a second thought about them. Tell your kids you love them, hug them, kiss them goodnight. That is what really counts!!

Thank you for sharing this. I am going to copy this and keep it with my records that I to Drs and ERs. Maybe coming from one of there peers might help. ( we can hope)

Hi Lynnie, how is your shoulder doing? I gave in and got another cortisone injection. Truthfully I feel so much more in control of things. The pain was wearing me out, and making pots symptoms worse. The pain is about 95 percent gone for now.

I hope you are able to get some help and answers soon for all that you are dealing with. Hang in there!

Will do.

Alex, you are so right. The more natural the better. So I'll let you know in 30 days if there is any difference in my BP. Do you know why the rainis are soaked in water overnight?

If 5 little raisins can help, I'm all for it! Ha ha. Thanks for the web sights. Love the recipes.

Hi Hope, there was a thread on this a month or so ago. There was some very good advice, and research articles posted. I would try to find this, it might help. Best of luck.

Yes, I have it in my shoulders. I am always amazed at how many symptoms we share in common. The more we find, the more I wonder which one many have been the trigger for all of this.

Just had this done at Mayo, showed ulser and celiac disease. You will be fine. It only takes about 15,20 min to do, and you will be resting comfortably. Hope they find something that gives you some answers to your problems.

Wow! How wonderful for you. It is sooooo nice to hear about someone improving. I was just diagnosed with celiac, and have only been eating glutton free for 5 days. Still trying to figure out all the hidden stuff, but am on my way. I hope and pray that I will see improvement also. I'm sure there is going to have to be some. Thank you for sharing your story. Best wishes for continued improvement.

I just love Bette Hagmans gf recipe book.

So many things in this life are just so unfair, and no words can express the deep sorrow you are feeling. I can say I understand, but know one really understands but you. Dealing with grief is such a personal issue. But I hope you know that you are not alone. I hope and pray that you get some relief soon. Don't lose your faith. Hang on to the memories that you have, and try to find comfort in them. Remember we are always here for you. This is a safe place to vent. God Bless

Don't be. What you have been through thus far is really the worst part. I know it's a scary thought, having to go before a judge and all, but really it was not near as bad as I thought, and only took about 20 min.

Katy, I do wish you the very best. I am so glad that you are finally approved, and I hope it helps.

Shona

Sorry, I'm an oldie also, but had chic pox as a child, no vaccine, then shingles at 19 yrs old.

Hi Sue, these are the names of the tests: Gliadin IgG, Gliagin IgA, and Tissue Transglut IgA Ab

Hope this helps.

Low sodium is tested with 24 hr urine. I am really not sure how they tested for the low blood volume. I will ask my husband if he knows. DrGoodman decided not to put me on any meds at this time. Since they found the celiac, he wants me to do the glutton free diet first and see how that affects the pots, and of course increase the sodium.

As for exercise, He said to stop PT, and get a recumbent bike for home. He said it is imparitive to exercise DAILY. No matter how you feel, to try to do some. He said it is the ONLY true help for pots. Not that there won't be relapses, but with perseverance and time I should see improvement.

Celiac is an autoimmune disease. I was not tested this time for small fiber neuropathy. I just know that I did not have this problem until a few years ago, after pots.

Hi All, A week of rest at a beautiful lake in Az after a wk at Mayo was wonderful. But I am glad to be home. Thought I'd give you an update on finally test results and recommendations. POTS is now labeled, Hpyeradenergic.

Low blood volume. Celiac disease. Extremely low sodium levels(which really floored me, I was just positive I was getting enough salt). No mast cell.

Dr Goodman says hyper pots and mast cell have several things in common, such as flushing.

The celiac was a complete surprise. I have been complaining to local Drs for two or more years about stomach- bowel issues. Dr Goodman picked right up on it the first day! Biopsies confirmed it.

I know we talk a lot on the forum about causes of dysautonomia and what part autoimmune disease plays into it. one thing I know, pots symptoms were first, but my body is breaking down now. Fortunately I can help it by diet and exercise. (Any gluten free recipes appreciated) Dr Godman, and Dr Harris would like me to return in 3 months if possible.

As for the low sodium, their recommendation is pedialite, GU tabs, or Nuun tabs.

If anyone has questions, feel free to ask.