Mydoggielovesme2

Bebe, I'm so sorry, you have had soooo much on your plate of late. (Daughter,husband sick) Then to have a stupid Dr say that to you. It's just shameful. I had a bad experience with my GP this wk also. Questioning Mayo results and diagnosis. Says he won't believe them unless Dr Goodman personally explains them to him. Said he never heard of such a thing as Hyper Pots. Or the kind of testing to get that diagnosis. So even having the diagnosis doesn't make getting decent doctoring in home town any better. Wish we could clone some of the Dysautonomia Dr instead of sheep! Heha

I started exercising again after going to Mayo. Dr Goodman convinced me to really push through the rough stuff, and not give up. I had been going to PT for 2 months prior to mayo-twice a week. He said that was not enough. He felt exercise had to be a daily thing. So we got a recumbent bike for home. The results have been encouraging. I am no longer passing out after 5-10 min. I have worked up to 3-5 miles, and 15-20 minutes daily, and am able to do a resistance level 3. It may not seem like much, but for me it's a huge improvement. I have a long way to go, but am hopeful.

Fantastic! Way to push through and keep living your life. Inspirational! Hope he keeps archiving his goals, now that this part of his life is behind him.

So happy for you Katie. It's such a relief when you can finally put the worry and stress of this behind you. Congrats!

I went through this a few years ago and had the same type of questions. I got mine and I think you most likely will too. Wishing you the best. I know how stressful it is!

Thank you for posting this. Will look up as soon as I log off the forum. I am so afraid of the dentist since getting POTS. Several bad experiences. Hope this has some helpful info, really need to get to the dentist again.

Do you think it could be med related? Maybe a side affect?

Before going to Mayo, I was starting the Paleo diet. Now that I have been diagnosed with Celiac disease, I am completely gluten free. (No cheating) we are going organic, whole foods ect. Only eating meat a couple of times a wk. Am starting to notice some real improvement. Less brain fog, more energy, less stomach problems. Still have a long way to go, but hope for more improvement.

Wow! What a wonderful presentation! Finally something I can truly understand. I really appreciated the way you broke down and explain everything. Thank you so much for sharing this with us. I can't wait to show my family. Again, many thanks to you Carrie. Welcome to the forum.

Which Mayo-what state are you wanting to go to? Much info online.

I definitely get scalp pain with headaches. (Migraines) My chiropractor says it has to do with nerve endings there. Whatever the cause, I can hardly stand to have my scalped touched, yet feel the need to apply pressure to my head because the headache pain is so severe. If that makes any sense. :-)

Thanks Alex, you are soooo right, it is urine not blood test. (I'm not blonde, so guess blame it on brain fog.... ;-)

The advice from Dr Goodman from Mayo: Nuun tabs, or pedialite, 2.5--3L of water per day, with half being one of these. Also to salt food liberally. Have you had your sodium levels ck, with a blood test? It can give you a good indication of where you are, and where you need to be. When he cked mine I was at 80, should be 170. I was so surprised, I too crave salt, so much so that I would even put some in the palm of my hand and just eat it. (Sea salt) that's why it might be goo to get cked.

Thank you all so much. Quite some time ago I posted about barometric changes affecting me, and this week has been a doozie. I know that's what triggered this episode, but I just can not shake it. Going on 6 days. Thanks for all the advice and suggestion. Again I am amazed at how many things we POTSies have in common. LMG- not sure the answer to your question about Ultram. I would hope only when having migraine.

Thank you all so much for suggestions. Just called Mayo, Dr Goodman, his nurse said he suggests Ultram. But wants me to get from my GP. Have appt in 2 1/2 wks. I just hate another med that's additive. Took Imitrex years ago, too many side affects. I ve just been so miserable this week, guess I'm feeling whinny. Hope you all are having a better wk than me.

Hi All, I know we have talked about this a lot on here, but I'm desperate. This has been the worst migraine week in a long time for me. I used to be able to take excedrine migraine, but since they found the ulser, that's a no go. Has anyone found something that works? Can't take Advil, or Tylenol either. I'm about ready to give in and go to the ER, but hate that route. Right now, ice is all I can use. Help.........

Oh yes. I get this from time to time. Dr Goodman thinks its just another area of flushing from my Hyper Pots.

Bebe, my thoughts and prayers are with you. Sounds scary, but at least you are getting treatment and care for her right away. The fact that you have a good Dr will help get you through. Take care of your self also. Know that you will have so many here that are sending positive thoughts and prayers your way.

Bravo!! My list will be coming soon......thank you.

Bebe, Really hope all goes well tomarrow. I truly admire all you parents out there dealing with a chronically sick child. God bless you all.

Everyone reacts differently to the test. Some people it my take the full 45min, other react quite fast. I would suggest you ask for IV fluids after though. This can help with a faster recovery after.

How true Tachy! Thank goodness for this forum. At least we have each other to bounce ideas and frustrations on.

""" You know all the bill collectors number by heart, you answer the phone as mr. Patel and mess with them for entertainment to break the boredom. """. Ok that one really made me laugh!

Bebe, I went for years with a Pots" diagnosis. But it was not until going to Mayo that I found out I have Celiac disease. I really thought Pots was first, but now wondering if this may actually be part of the cause of pots. My point is, I never pushed for more answers. I had (and still have) so many varying symptoms. But once I put them on a list, and went to a great Dr, I started to get some answers. Sure I'm still sick, but getting the right tests, and getting some answers is soooooo reassuring. I have some direction to focus on now. I have areas to work on that will improve the quality of my every day life. So keep searching, keep asking for more tests. You are NOT crazy. You just need to find the right Dr that will help you with your journey.

"Having compassion starts and ends with having compassion for all those unwanted parts of ourselves. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy." —Pema Chödrön...........this was my favorite quote.