Anyone else have problem standing up from a squatting position, or leaning head down to look at something? I get dizzy, nauseous, and feel faint and it takes a few minutes to get over it. It's hard to live life without doing these things. I'm going to ask my neuro for a tilt table test tomorrow. Is this a normal test for mg?

I don't know if tilt table testing is normal or not, but I've found myself going black when I stand up too quick from a lounging position. If I sit up first and then stand all is good, but if I'm reclined, legs over the arms of a chair and go straight to standing everything will go black for a few seconds... I understand mestinon does affect blood pressure.

Brian.

I have problems gettin up from a squat - but my hemo told me that it is a side effect from the pred - it can make your muscles weak - esp in the legs - learned that from getting stuck on the toilet! LOL!

As for the other - nope. No prob there.

How are you? Are you OK? How is the family?

Big hugs!
Erin

I have the same problem, in fact just this morning I almost passed out in the driveway, thank goodness my husband and son were there to help me. I have normal blood pressure and take no meds so I don't know why it happens.

I've always had low blood pressure. Whenever I go to hospital and they test it they say, "oh you have low blood pressure" and I say yes always have. In fact the last time I had IVIG, it was below the normal range of the machine, which alamed, but the nurse said it was ok. I also seem to have a high heart rate to go with this, but no one seems to worried about it, so I'm guessing I shouldn't either.

I do black out when I get up from a lounging position. Sometime when I get up too quick from my chair it happens too. My head feels heavy and I have to close my eyes till everything goes back to normal. I'm not sure why it happens too. It happens almost everyday... I'm also not taking any meds and blood pressure seems to be normal too.

Annemarie, More and more people with MG seem to be having problems with orthostasis (the ability of your body to adjust to changing positions).

The autonomic nervous system is weird!!! They don't know lots about it. It is not a normal thing for someone with MG to have a tilt table test. My cardiologist has been threatening me with one too.

Just have it done. The thing is that it's not what your regular BP sitting around in a doctor's office is that's important in this situation. It's what happens to it when you shift positions. That's why they do the tilt table test. They look for lots of stuff like whether or not you have increased sweating.

Redtail, An increase in heart rate can mean that your MG is getting worse. That should absolutely be reported to your neuro. When the heart can't get enough oxygen, it "speeds things up" in order to get more blood/oxygen to it and the rest of the body. It can also go up during an infection. An increase in heart rate can also mean that you are dehydrated. It usually goes down during overhydration. There are exceptions to every rule though.

Connie, what you are describing is not normal and highly dangerous. Bring this up to your neuro right away. A tilt table test is EXACTLY what you need too. You may have orthostatic hypotension, meaning your BP drops when you stand up. It can be an indication of POTS (postural orthostatic tachycardia syndrome). If your pulse goes up 30+ upon simply standing up, that is one indicator they look at for POTS.

Do you guys have "tools" at home like heart rate monitors, like people use when they exercise? Or a BP cuff? Take your BP/pulse lying down and then take it right after you stand up and then at the 1 minute mark. Connie, if you can't stand up like that without fainting, then just sit up and do it!!!

Geez, guys, I sure hope you are telling your docs about all this stuff. It's NOT normal!

Annie

Thanks for this Annie,

Iam definatley not dehydrated, always drinks lots of water, as I've ended up in hospital a few times when I've been sick and badly dehydrated.

I will mention my high heart rate to my gp, as he is more receptive to these things, and my neuro nurse, she is GREAT, she just sits and talks to me and then says " your breathings a bit bad, or, your eyes arn't too good today", she is a very special lady!
thanks again
Kate

Thanks for all the responses! And AnnieB3, I'm going to order my doctor to order the tilt tests! I'm tired of waiting, waiting, waiting. I feel like I'm always directing him what to do.

Erin, bless you for asking about the family. Unfortunately, we're rather dysfunctional. I don't get much support. Two grown sons, and sometimes small grandsons, still living here at home. I'm still expected to do all. Husband's work keeps him out of town, I get chewed out for all the things I haven't done when he comes home. Nuff said. I know there are many people out there that have things worse off, so I try not to complain. The sun is out today, should be in 70's. I can sit outside with 2 year old grandson and watch him play and enjoy every second!

Annemarie

Hi, I just wanted to chime in since I have been diagnosed with Dysautonomia for well over 15 years, and I also have Pulmonary Hypertension that was diagnosed almost two years ago.
Both can cause someone to pass out, or become very dizzy upon standing, moving suddenly..etc. Oh, and since I also have Narcolepsy, I wanted to let you know that it too can cause some things simalar to this, and it's a good mimic of MG. ( I know, I'm a mess, for Narc. you'll need a MSLT test) I have both the Gene, and a very positive MSLT.
If you're in your doctors office, he may have you lay down, take your blood pressure, sit up-take your blood pressure, stand up-take your blood pressure. This is a good indicator for dysautonomia, but the tilt table is pretty accurate, and you'll be injected with an injection, that at the moment I can't remember the name..sorry.
Having said that, meds can also cause these issues, and other medical issues can also cause this to happen, such as anemia, and adrenal problems...diabetes...etc..
It's so important to ask your doctors about it, as it could be something, or it could be just an adjustment to some meds, or vitamins. Please don't let it go unchecked.
Love Lizzie