New Here-hubby Has Pots

[classygirl98]

After seeing doctor after doctor and suffering with this condition for five years, we finally found Vanderbilt University in Tn. He is to admitted in May. I hope this is his road to recovery. He is going in the research program. Anyone here been there and done that? Would like input about what to expect and if they were helped.

This is kind of our last hope. When I talked to his regular doctor about Vanderbilt he said yes that is where he needs to go, but why didn't he tell us this five years ago?

After reading this forum it is nice to know we are not alone. I did not realize how many other people suffer from this. Is there hope for him? Can you live a normal life?

I have learned much patience in helping my husband thru all of this. DK

[Ernie]

Hi,

Welcome aboard.

We have discussed Vanderbilt quit a lot lately and you could do a search with the search button on the upper right corner. You will find many posts talking about it.

[gdomaracki]

So glad you found this forum! Its always a blessing to know that there are other people going through exactly what you are and are here to listen and support you. There is hope for us and I have heard many good things about Vandy, but have yet to go. I do hope that your husband finds relief from his symptoms and gets feeling a little better soon! It takes time, too much sometimes. But with patience, we can get better. Welcome again!

Nicole~

[MightyMouse]

I would like to second Ernie's suggestion to use the search feature and look up the terms Vandy or Vanderbilt, and you should find a great deal of information. Many of our members have participated in research there and/or got a diagnosis there.

Nina

[bttrflyamby1981]

Just wanted to welcome you and wish you and your husband luck.

Amber

[BuddyLeesWife]

Hi and welcome from one spouse to another - my husband has NCS.

We have been fortunate in that after making some life adjustments, he has been able to lead a full and productive life with occasional bumps in the road. Unfortunately we just hit another bump yesterday as his dr. suspects that he is in the beginning stage of Rheumatoid Arthritis.

I will be watching for your news from Vandy. I appreciate your comment on learning patience as I am still struggling with that myself.

[classygirl98]

Thank you for all of the warm welcomes. All of our friends know he is sick and getting worse but it is hard for them to understand it all. It is nice to meet people that actually know what we are going through. I think this is just what we needed.

I have noticed that with my husband there is no hurrying to do anything. He just has to take things one step at a time. It is hard for me because I am a hurry up and get it done kind of person. I am learning to be more patient and compassionate and try to understand what he is going through. He just used to be a very active person and it hurts me to see him not be able to do things that he used to do. He just wants to get better and get back to his normal self. Will this be possible?

We ride horses so he can still do that, but there has been many a time he has to get off to keep from just about falling off. He does not want to give that up. So far that is the only thing that he enjoys that he can still do. Hunting is out of the question. Playing sports is out of the question.

Please share your experiences with me. I would love to hear how you all deal with these and everyday living. Debbie

[morgan617]

Hi and welcome. Just one day at a time. There are ups and downs and in betweens and i guess you just learn to roll and adapt to them.

The big thing with me is, when some new blow happens, I just need people to understand that I need a period of time to grieve and be frustrated by yet another loss of some part of me. Then i pick my self up (sometimes literally!) dust myself off and keep going.

As the person with this illness I try to keep in mind that it's not just affecting me, but everyone close to me too. This has changed everyone's life, not just mine....morgan

[classygirl98]

Another thing I want to comment on is the public eye. A lot of times hubby walks like his drunk and we all know he is not. Sometimes he completely passes out, sometimes he just has to stop and stoop down until he can get his bearings back. People just stare at him. I have never been embarrassed and have never offered an explanation unless of course they ask. How many of you had this happen? And how do you deal wtih this?

Sorry for all of the questions. I am just happy to be able to discuss this with someone who knows and understands. Debbie

[dianaD]

Dear DK,

I'm glad you found us here, but I'm sorry to hear about your husband's difficulties. He will appreciate any and all patience you can find for him.

I don't want to alarm you, but when your husband said he walked "drunk" sometimes, I just wanted to be sure that a doctor has ruled out multiple systems atrophy (also called Shy-Dragers). A friend of mine who had it showed that as one of her early symptoms.

Hopefully, you guys just have "plain ol' POTS" to deal with and if so, I hope we can all answer every question you have. Believe me, you get to be somewhat of a medical expert after a while....

Hang in,

Diana

[BuddyLeesWife]

My husband gets that drunk-like walk and slurred speech when he is pre-syncope and if he doesn't lay down he can progress to passing out. I hate to admit that before he was diagnosed I actually accused him of drinking too much and not fessing up to it when in fact he hadn't had anything at all. When he is like that he needs to lay flat and drink, drink, drink to get hydrated. In about 20 minutes, he is usually ok. He now understands the importance of staying hydrated and I am no longer a water nag.

He tries to get adequate rest, eat better than he used to, drinks lots of fluids, takes his medication and has strong conditioned legs that help keep the blood pumping. Nothing magical but it has worked for him. It is when he overexerts himself that things go wrong - that is the ongoing struggle for balance.