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LindaJoy

May Be Testing Husband For Pots: How Many Couples Both Have Pots?

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Hi, everyone.

My husband got sick about six weeks ago, ended up in the hospital, went to Cleveland Clinic for testing, and now, he's still got symptoms but the docs can find nothing to explain them. Guess what his symptoms are...

--bp fluctuations (he'll get high spikes, then go low)

--alternating diarrhea / constipation

--weight loss (32 pounds in less than three weeks)

--loss of appetite

--exhaustion after little physical exertion (he just lays around mostly, and that's not him)

--tachycardia (usually when up)

--headaches

--overall feeling of not being well

He sounds so much like me, it isn't funny, so I've had him do two poor man tilt tables at home, and he's failed both miserably. His blood pressure goes up a bit while he's perched stiffly up against the wall for ten minutes, but more notably, his legs and feet turn red with blood pooling, his hands tingle, he gets nauseous and feels awful, he gets a headache and may start to shake, and his heart rate goes up maybe as much as 30 bpm. Once he sits down (today, he didn't even make it ten minutes, more like six), he feels awful for hours.

I thought to myself, "Okay, the docs aren't finding anything, so what about POTS?" The docs think John had a severe virus that was going around that started all of this, and his body may still be dealing with the virus, but what if he's developed POTS while fighting the virus? He was pretty dehydrated when he entered the hospital. He felt a lot better on an IV.

My question to all of you: Have any of you ever known a husband and wife to both develop POTS from a virus, possibly years apart? My husband used to work in a chemical plant, a long time ago, before safety was a priority, and I've thought often, since my diagnosis, that he has some POTS symptoms of his own, possibly from working around chemicals for so long. Now, I think maybe this virus pushed him over the edge.

What are the chances we both could have POTS? I know a couple who both have primary Addison's, so I guess it's possible.

Same story here with him as with me and many of us here: Docs aren't finding anything, so they are saying he's fine, good to go; or they're passing the buck to other docs; or they're just plain not even calling back. Poor guy, he's getting a personal taste of what I've gone through all these years.

I'm just waiting on the "anxiety" diagnosis that's sure to come.

I've got him scheduled to do autonomic testing at Cleveland Clinic at the end of August. Wish I could get him in sooner, but the secretary said they are so busy anymore, people coming from all over.

Just thought this was interesting--I'm sure that's not the word I want to use--more like disturbing, and wanted to share.

Lindajoy

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Wow, Linda Joy. That is really something. One of the 'benefits' of having dysautonomia is that we recognize the symptoms in other people, often before the doctors finally do, if ever. Your husband is lucky that you are getting help for him. I hope you get some answers soon and I hope YOU are feeling OK.

Marsha

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Wowzers. That's so ironic. I hope you both feel better soon!

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I'm beginning to wonder if it's contagious myself. My girlfriend has been dizzy and nauseous and her BP is super low, her breathing has gotten bad too like mine and we both are allergic to dogs really badly, when we both had animals for years. Only thing is her HR isn't cray like mine, so I dont think its POTS but more like NCS or some kind of dysautonomia. She's always had major delayed emptying issues though..

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Wow Linda, yes my husband developed POTS/CFS a few years ago. We know for a FACT he was not always sick because he was my "control group" for BP and heart rate readings while standing. hah!

I hope it really is just a virus and he will get better. You gave me encouragement earlier tonight, so here's me returning the favor. :D *Hugs*

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Wow, I don't think it's contagious, RichgotPots, but I'm wondering if we both can have the same thing, or if I'm reading something into it that isn't there for him, because I have it. (I'm sorry about your girlfriend also having this.)

Then along comes Dana, and she and her husband both have it. I'm so sorry for the two of you. I hope you both aren't down at the same time! Literally, at times...:)

I suppose we both can have it, like you all with your friend and husband. I just don't want to put my stuff on him, yet, I think when we have something, that makes it easier for us to spot in others??

Thanks, all.

Lindajoy

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Sorry, this is happening to him, now too! Silver lining at least now he knows how you've been feeling and that you weren't faking it. Tough way to get empathy though.

I think this also points to the fact that pots itself is a symptom of most likely some other underlying problem. Many types of illnesses can cause pots and really need to be eliminated, before one can say it is only pots. There are also so many ways dysautonomia presents itself, even the research centers like mayo and grubb are seeing this as the research as evolved. Finding cause can help treat the cause of the symptoms as well as meds that treat symptoms alone.

Glad your going to cleveland, inquire that they look into testing for cause. Alot of that is not something a regular doctor or hospital will do.

If you search my old posts using phoenix neurology and Todd Levine, I posted all the rare things he tested me for. My skin biopsy found SFN, and then we found immune difiecency and then the autoimmune diseases which I knew were there finally showed antibodies. I treatments for each of them now and there has been some improvement in symptoms, but in my case there is no cure and the best we can do right now is manage it. There is some peace in accepting it is what it is and at this point if I get any great improvement or we are able to keep from getting worse then that is icing.

Another thing I've realized is god can still work through you even when your not well and that has been a real blessing and a gift.

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LindaJoy, I hope he doesn't have it...that would be terrible, if you were both symptomatic at the same time!! Mine started with a virus, too.

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Linda I can't lie. It is not easy whatsoever. Financially we are broke because neither of us can hold jobs. We keep going, but I do hope there's an end in sight for us... I want one of us to get better.

Hopefully for you two, it won't come to this and he will get better. I don't wish anyone to have to experience both being sick. Emotionally it's one of the hardest things I've ever gone through. It's probably making both of us more sick because of all the stress.

Wow, I don't think it's contagious, RichgotPots, but I'm wondering if we both can have the same thing, or if I'm reading something into it that isn't there for him, because I have it. (I'm sorry about your girlfriend also having this.)

Then along comes Dana, and she and her husband both have it. I'm so sorry for the two of you. I hope you both aren't down at the same time! Literally, at times... :)

I suppose we both can have it, like you all with your friend and husband. I just don't want to put my stuff on him, yet, I think when we have something, that makes it easier for us to spot in others??

Thanks, all.

Lindajoy

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Maybe an environmental factor - like something in your house or water? It would be weird if you both have it.

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Thank you, everyone.

Yogini, I thought that, too, but we've moved three times since I developed Dysautonomia, and I had POTS long ago, in the early 90's, whereas my husband just started with his after this really severe virus he got. He also has hemochromotos, with co illness, arthritis.

Dana, I'm so sorry for your financial situation. I often wonder how much longer my husband will have his job, he misses so much work. I keep hoping I won't get down, too, while he's down. He did have a good day yesterday, though. By evening, he wasn't feeling too good again, but he said he felt better yesterday than he has in weeks, so that was hopeful. In the meantime, he continues to lose weight.

Thank you, Arizonagirl, for all your information. Dr. Levine. I've heard that name.

I thought of that too, about his seeing what I've been going through all these years and developing empathy for the situation. He has, I think. At least, he's made comments about finally understanding what I've been going through, being so sick and not really knowing what's wrong. He's worried that soon the "It's all in your head" comments will start being said. He already got a card from his dad's girlfriend, not a traditional get well card, but a "Life can be disorganized, which causes stress, so hang in there," card. John said, "What, is she saying this is stress, that it's all in my head?" He was so upset. So was I. I know what that feels like. Anyway, I thought the empathy lesson would all be on his side, but I have to admit, I've learned what it's like to be on the care giver side too, and it's hard, as well. I feel responsible to get him to doctor appointments, to know what to do with each of his symptom, etc. It's hard from this end, too.

Thank you, Kim, for your support, yet again, always. Yes, I hope we're both not down at the same time, too. I worry so much about that lately, since I'm "responsible" for taking care of him right now. I just keep praying, every day, for God to keep me strong until John is better, then I can fall apart again. :)

Take care, everyone. I'll let you know more as I know it.

Lindajoy

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Interesting that the empathy lesson has gone both ways now. I'll have to remember that when I get into it with my husband, who I'm financially dependent, and does a great job of providing for us and having to listen to me endlessly at times. I'm sure it gets old for him, heck it gets old for me too!

The crazy thing that we get from doctors and others, I do think happens more with women then men. Your husband may end up being able to speak out on this issue for all us women who've had to deal with it for years, now that he has experienced the bias himself. Good things can come out of our difficulties and our experiences can help others. That is why this is such a good support forum.

I still think it would be a good idea to let CC know that you both have similar health symptoms, there just may be a connection.

Good luck to you and take care!

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Linda I can also relate to the empathy. My husband said he can't believe how much of a jerk he was to me at times. He had no idea. We've forgiven each other for all of that and it's behind us now. But I also learned that it's pretty hard on the care giver too. I can understand why he got frustrated and upset with me at times. When theres no easy solution or answer you feel stuck, trapped and helpless. It's like you are just watching your spouse fade away before you.

I truly believe your husband will get better. Take care. :)

Thank you, everyone.

Yogini, I thought that, too, but we've moved three times since I developed Dysautonomia, and I had POTS long ago, in the early 90's, whereas my husband just started with his after this really severe virus he got. He also has hemochromotos, with co illness, arthritis.

Dana, I'm so sorry for your financial situation. I often wonder how much longer my husband will have his job, he misses so much work. I keep hoping I won't get down, too, while he's down. He did have a good day yesterday, though. By evening, he wasn't feeling too good again, but he said he felt better yesterday than he has in weeks, so that was hopeful. In the meantime, he continues to lose weight.

Thank you, Arizonagirl, for all your information. Dr. Levine. I've heard that name.

I thought of that too, about his seeing what I've been going through all these years and developing empathy for the situation. He has, I think. At least, he's made comments about finally understanding what I've been going through, being so sick and not really knowing what's wrong. He's worried that soon the "It's all in your head" comments will start being said. He already got a card from his dad's girlfriend, not a traditional get well card, but a "Life can be disorganized, which causes stress, so hang in there," card. John said, "What, is she saying this is stress, that it's all in my head?" He was so upset. So was I. I know what that feels like. Anyway, I thought the empathy lesson would all be on his side, but I have to admit, I've learned what it's like to be on the care giver side too, and it's hard, as well. I feel responsible to get him to doctor appointments, to know what to do with each of his symptom, etc. It's hard from this end, too.

Thank you, Kim, for your support, yet again, always. Yes, I hope we're both not down at the same time, too. I worry so much about that lately, since I'm "responsible" for taking care of him right now. I just keep praying, every day, for God to keep me strong until John is better, then I can fall apart again. :)

Take care, everyone. I'll let you know more as I know it.

Lindajoy

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Could be that the virus triggered something underlying. The underlying thing could have been caused by the environment. Even if it is much more common than doctors know, POTS is pretty rare. It seems like too much of a coincidence that 2 non-blood relatives would get it. But you never know. After going thru this, I would believe anything either way!

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Thanks, everyone, again, for all your comments, sharing and support. He's doing better, bit by bit, each day. He tried to do a bit of yardwork yesterday, so he's tired and has a bit more symptoms this morning, but I think he's feeling a bit better than he was even last week.

I don't know if I told you all this here at any point on either of my two posts about him, but he used to work in a chemical plant years ago, when safety wasn't a concern, and he used to breathe in a lot of chemicals, and get them on his skin. When I first got my POTS diagnosis and learned a bit about the condition, I thought John, even then, showed some symptoms of the it. Maybe all those chemical exposures could have done something to his autonomic nervous system? Then, having this severe virus was the final straw that pushed him over the edge?

I'm starting to have a flare of my symptoms. It's this clonidine patch, I think. I've either gotten used to the low dosage and need more, or the side effects are getting worse. I haven't been able to sleep the past three nights, the anxiety has gotten so bad. I keep praying my health will hold out.

Thanks, again, everyone, for taking your time to help me with my situation, and my husband. You're such a great group of people. There are some days I'm actually glad that I have POTS so I was able to meet all of you here. Then, I think to myself, "Are you crazy?" :) :) :)

Lindajoy

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Linda, I had problems with clonidine patch. After using it a few months I became allergic to the adhesive, it also wasn't lasting a full week and it actually had been prescribed by a pain doctor. This was before I knew I had dysautonomia. So, she took me off the patch and we went to orals. Once on the orals my body started demanding more and more of it to keep my bp under control. I had to go off of it, probably I bit to cold turkey and it was scary, my cardio then put me on different bp med but it was a rough few months.

Dr. grubb uses it a lot so I don't know if how it was prescribed caused the problem or what. But, I told him what happened and he put me on labetalol instead.

You know I wonder for those of us who have the hyper response either from pooling or nerve damage, if trying to stop the norepi response to vessel constrict to much, keeps the blood from getting to the brain and then the body produces even more norepi to overcome the meds and then requiring more medications as the the bp/hr rises again.

The treatment that lowered my bp/hr the most, it went normal, was plasmapheresis and I have had some improvement with the ivig correcting some of the nerve damage with some mild/moderate improvment in my bp/hr. Since mine is autoimmune the pheresis removed the offending antibodies and the nerve damage can repair. With IVIG we are keeping my infection rate down and trying to modulate the immune system from attacking myself. This has been a slower process with hope for continued improvement over time. The thing is stopping either of these treatments means my body goes right back to where it was and the treatments have to be given from weekly to monthly because the body keeps producing the antibodies and these treatments only last in the body for varying time frames. They are however at least trying to address cause, I am grateful for the treatments, better then nothing, but still not a cure or perfect treatments.

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Hi, Arizona Girl,

I'm going to half the patch (can do this by keeping one side of the protective cover on while wearing) and see if I do any better with it. I'm having such severe anxiety with it, it's not funny. My skin is becoming a bit red and dry in the areas the patch has been, but they heal in those areas, so I'm not too concerned about my skin, just this awful, awful anxiety. It's gotten to the point, I hate going anywhere or having company over.

I really like your thinking on what this med could be doing in people with hyper response. That's exactly how I feel on this, like I'm constantly putting out nor-epi and I'm wired all the time. I feel a lot better if I'm up moving. And, I have secondary Addison's, so I'm putting out adrenaline all the time; since my adrenals don't put out cortisol and I get stressed, they will fire away at adrenaline. I'm on overdrive constantly. I don't need a med adding to this. That makes total sense to me, what you said. Only thing is, I don't want to go totally off the patch since the clonidine is helping me to be able to eat without crazy reactions of my nervous system.

I use the patch to try and balance my nervous systems. I think it worked at first, but now, it seems to be giving me symptoms. Like I said, I'm going to cut it in half, leaving on one of the protective strips, and see how that goes. Maybe I'm just getting too much.

Thanks for the thoughts. Great thoughts.

Lindajoy

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Before you do that I would talk with your doctor first. Especially after what happened to me. Read your pdr and make sure that lowering or stopping dosage won't cause a heart attack. When weaning down from one med like this you probably need to be starting another at low dose to compensate. Which is something you must ask your doctor about. Perhaps she can contact Dr. Grubb and ask him how he manages this in patients like us.

I got really sick at first one I went off this without having another bp drug on board. I forget which one now but it may have been atenenol. That one lasted to long in my system and gave me low bp at night.

I'm on labetalol very low dose now, it is an alpha/beta so it is suppose to balance the swings a bit better. At least that is what grubb told me, but I haven't been back to toledo for follow-up, to question them on this myself. To be honest treating this is still very young and in the research phase. If you read Grubb's 2011 review of his hyper patients that is obvious and treatment for us hypers I'm sure will be evolving. So be very careful!

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Oh btw the symptoms you describe are very close to what happened to me, but the I also had extreme itching at the patch site. So knew that was allergic response and I do have problems with different types of tape.

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Linda,

For the redness and itching at the site of the clonidine patch, use a medium or high potency steroid cream where you are going to put the patch. Wait 10-15 minutes, then apply the patch. This is well described to prevent or reduce the local skin reaction to the patch without affecting the drug absorption. Also changing the patch every 5 days or so will help with that. I have very high NE levels (standing 3300) and the clonidine patch is very effective for me. I don't have any side effects like you and Arizona Girl. I usually take a 0.3 mg patch plus a 0.1 mg patch but at times I need a little more or a little less and I do exactly what you are doing and cut the 0.1 mg patch in half or even thirds. I have also found that if I take oral clonidine BEFORE something stimulating (eg my kids' baseball games) that would previously cause hyperadrenergic symptoms and a significant BP rise, it is very effective at preventing both the symptoms and BP rise.

The clonidine patch is very long acting and according to the package insert you shouldn't get the rebound hypertension you can get with the pills by just stopping them, but you sould monitor your BP when cutting back the dosage to be sure it doesn't shoot up.

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Linda, my husband also has a mild form of dysautonomia. He was recovering from Glandular Fever when I first met him and he was always exhausted, was both heat and cold intolerant, had a racing heart and odd breathing patterns for at least the first 18 months to 2 years after we met. Then slowly over a period of around 8 years he got better and better. Then I got sick! I have wondered if it is something to do with our house...

He tells me he has never regained his pre-Glandular fever health. He looks normal, holds a stressful full time job, but I know he's not like "normal" people as he comes home tired and sometimes exhausted. He sometimes feels very weak if he overdoes things and very occasionally gets the racey heart. His energy levels do not even come close to my energy levels before I got POTS. There have been a few times since I've had POTS that we've both felt pretty crappy and it's no fun as we can't look after each other, let alone ourselves.

I hope your husband gets better soon or at least finds some answers. With your support he will be ahead of the game in terms of diagnosis if he has dysautonomia/Pots.

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Hi, everyone, and thank you for your responses.

Arizona girl, I talked with my pharmacist yesterday and she said it should be okay to do what I was thinking, leave half of the protective cover on my patch to get only 1/2 the medication, but monitor my bp. My doctor had said, weeks ago, she didn't want me to continue with the patch because of all of the side effects. They both said, the doc and pharmacist, that since I'm not taking it for blood pressure control, my bp will rise with w/drawal, but shouldn't go into the dangerous zone. I know not to listen to any medical people on issues like that anymore because we never know what us Potsies are going to do on anything until it's given to us, and even then, we're all different.

Thanks, Hyperpots, for sharing your experience and for your advice. I'm glad clonidine helps you so much. It helps me, too, I just think it's too much for me. That's why I want to cut it down a bit. My skin is okay. It does get a bit read and dry in the patch areas, but honestly, I have mast cell disease and my skin can get to be a mess, and with the patch, it's not do bad.

Lotusflower, thank you for sharing your husband's story. I'm sorry you both have to experience Dysautonomia but I'm very glad he's doing better. My husband has been doing a lot better the past three or four days. He still gets very tired and his guts aren't back to feeling well, but he's not having the terrible bp fluctuations and head pressure lately, so that's a really big improvement for him. He sees our pcp tomorrow.

Take care, everyone. I had a bad night last night, so not feeling so great and am going to go sit in the tub.

Lindajoy

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