Husband Diagnosed With Oh. What To Expect?

[LindaJoy]

Hi, everyone.

After waiting months for the testing, my husband had his tilt table test this past Tuesday at Cleveland Clinic. He was diagnosed as having OH. He lasted 34 minutes, with symptoms beginning at 30 degrees tilted (numbness in his hands). When raised to 70 degrees, the numbness worsened, then he got other symptoms that followed, like nausea; headache, with pain going into his jaw; calf, hip and lower back pain; sweating; shakiness; tingling; graying of vision; shortness of breath (severe); tinnitus (right as soon as he hit 70 degrees is started and got bad).

His heart rate resting was 55 bpm. The highest it got was 103, but it didn't get that high until the last three minutes of the test, or so. His systolic went down almost right away, by 23 mmHg. His diastolic was fairly consistent. He felt horrible, and was shaking for hours afterwards. He is still recovering.

He's scheduled for tests to find the cause of his OH in October--hemodynamic, stuff like that.

I've read some posts here that talk about OH, and if it's POTS, or if POTS patients have OH, too, things like that (I have POTS), but my husband wants to know what someone with the diagnosis of OH feels like every day. Do OH people feel like POTS people do?

Also, he has hemochromatosis, an iron-storing blood disorder, and wonders if anyone here with OH also has that, and if so, how do you deal with both with having to have phlebotomies?

Thanks, everyone. I have had POTS for years, but I've never known there was a Systolic Orthostatic Hypotension, or even a Diastolic OH. Any information you can give would be very helpful. Thank you, everyone.

[Clairefmartin]

I found you on Dinet! Linda i hope you get some answers. I actually was told that they have redefined POTS and you cannot have POTS and OH. My neuro explained it in terms of a sudden drop vs a slower drop. He said that if BP drops slowly over time during a TTT, the OH is usually something besides POTS. But POTS can occur along with NMS or just plain cause your BP to tank and you to pass out. The cut off is 20 systolic. Do you know what his numbers were start to finish?

Talk to you soon!!! xoxoxo

[LindaJoy]

Hi, Claire!!! Good to see you.

I don't know his numbers start to finish because we don't have a copy yet, but Dr. Fouad sat down with us and went over his bp numbers, with his systolic dropped by 23 pts. nearly right away. She said he tried to overcome it, but it would fall again.

I'm sorry I don't have the exact numbers yet. She said she would be sending them to us. Cassandra has been great talking with John about it. She has OH.

I didn't know that about POTS and OH. Thank you for explaining that. The doctor at Case wrote on my TTT that I have POTS, OH, SFN and PN (what is PN?).

Take care. Hope you're feeling a lot better after your infusion.

Again, so glad to see you here!

Hugs to you, my friend.

[lillybits]

off topic here but I want to know what it is like for you with your husband being sick. I am interested in seeing what it is like dealing with someone like me. i know i stress my husband out alot with my medical and physical mess. if you wouldnt mind telling me what its like being on the outside looking in I would greatly appreciate it!

kim

[LindaJoy]

Hi, Kim,

It's probably a bit different coming from me because I have POTS, Addison's, Mast Cell Disease, etc., so I've been sick for years, and to be with someone who is sick now, as well, is probably a different experience for me than for a healthy person whose spouse has become ill.

But, I will say, when John first got sick and it was up to me to get him to his appointments at Cleveland Clinic (I hadn't driven in a very long time--it was hard), and to be the supportive one while he was in the hospital, arguing with doctors, etc., made me truly appreciate all he has gone through while I've been sick. It is very different going from being the sick / cared for one, to being the care provider.

I worried about John's health because I felt responsible to get him the help he needed since he was down and in no position to do it for himself. He said he felt the same way with me all the time. I worried constantly, and prayed constantly, that I wouldn't get down because John needed me, so the stress was huge. Like I said above, I was responsible to drive him to his appointments, hours away, when I hadn't driven in a long time, so this was hard on me. And, I saw in him signs of Dysautonomia, so I had to convince doctors and get him the testing he needed. We fired his doctor, got him in with mine (who is absolutely awesome), and thankfully, she listened and saw that, yes, he acted like someone with autonomic dysfunction. I learned, first hand, the stress from responsibility and worry that was on him so much of the time.

Right now, since he's gotten his diagnosis, it's been even harder, in a way, because he's very upset about it. One minute, he wants to learn about it, the next, he's snapping that he doesn't want it, doesn't want to deal with it, that he's fine, etc. It's like living with a yo-yo. I try to keep in mind what all he has had to listen to and go through with me, so I try to remain patient. I honestly don't know how to approach him right now. I'm the kind of person, you tell me I've got something, I'll research it and deal with it. Why? Because I have to. He's not there yet, and it's hard for me to know what to do for him. I'm used to everyone here on these groups doing the same as me--seeking information so we can all live the best way we can with what we've got. He's back and forth, and it makes it hard to know how to relate to him right now, but it's early. We'll see how it goes. Right now, I'm just following his lead. So, there is another thing that I'm dealing with that he has had to with me: How do you relate to the chronically ill person at times, when they are struggling so? It's another hard thing to do. All in all, you do the best you can, as long as you do it with sincerity, concern, patience and love.

I'm sorry that you and your family have to deal with these issues, too, Kim. It's so hard. John and I, over the years, have been at each other's throats at times, then other times, have relied heavily on one another since no one else is around.

Take care, Kim.

[yogini]

I think the symptoms/feeling is vey similar to POTS. That being said, we are all over the place. I think it depends on how severe his OH is.

[lillybits]

thank you very much for that. we are just backwards. my husband had health problems first. i was working as a nurse, comming home taking care of my husband and our kids, doing the house work and all that coes with the family. he was un able to work due to his back injury.then he had a heart attack so it was hospitals dr apts, paperwork he was angry . he has never had to be in the care taker position before and i have never been a good patient. so this is a whole new role for both of us.

[Clairefmartin]

Hi Linda,

I'm asssuming PN is partial neuropathy? Are they going to look for what is causing the OH? Hope you both are doing ok, I know this is a big adjustment and must be a shock to him (and you!), sending you hugs and love!

Claire

[LindaJoy]

I hear you, Lillybits. After my husband and I had been married around five months, his hip went out and I had to take care of him. About a year later, his back went out. Two years later, I was diagnosed with POTS. We've taken turns a bit, but he's never been long term ill, like now. I feel for you both. I'm so sorry for all you two are going through.

Thank you, Claire. I had no idea what PN meant. Yes, we go back in October to have the tests--haemodynamic and the others--to try and find the cause of his OH.

We're hanging in there. His mood is bouncing around like a ball, but that's understandable. Thank you for your kind words. He just keeps saying, "I can't believe this. It can't be this bad." I know how he feels, and I feel helpless. Yes, it is that bad, and it is real. But, he'll adjust; he'll have to.

You take care, too.

Thanks, everyone.