Friends,
Recently I began noticing that when I get out of bed quickly, especially in the middle of the night, I experience a lack of equilibrium. It has become more frequent lately, happening sometimes when I get up from my desk or especially when rising after bending over with my head down.

A good friend of mine is a cardiologist who said that he will check my blood for anemia, etc. when he gets back in town.

Has anyone had an experience with loss of equilibrium?

Danny G.

Danny,

I went through that off and on since about 2 months post treatment. Once I actually blacked out and fell. The doctors have checked out the blood and have no explanation. My hematocrit is down a little but they aren't concerned.

Ed

Danny,

I live with that daily. And it has been worse since treatment. Mine is caused mostly by low blood pressure.

I seem to catch myself before falling, but have had this all my life at certain times. (my daughter does too)

This of course is just me, does your blood pressure run low? (and yes I have been slightly anemic lately)

Laid back in Texas,
Dinah

Danny,

Maybe it just us Texas folks that are off balance? ha ha!

I have the same problem. I think mine is low blood pressure too. I've been told I'm not drinking enough water.

I get the exact sensation, when from lying down to standing. I have to let my legs hang down from the bed or sofa for a few seconds then stand up. It does seem to help.

Dizzy in Dallas
Lynn

Lynn & Danny,

Problem might lie in being a Cowboy fan, Packer
fans don't experience equilibrium problems!!!
Got to have a sense of humor now!!!

I have had no problems with it at all.

Dan

Hi Danny

I have had that problem. Even had a brain scan to see if I had any small blood clots. My standing blood pressure is much lower than my sitting blood pressure. Still have the problem occasionally but it is improving.

Best wishes from Helen, with love

I have been out of treatment since Sept. of 2002, so it would seem that the problem is not related to treatment. But yes, Dinah and Lynn, I too have low blood pressure, and in the past have felt a slight sensation when my head was down. What concerns me is that it is getting more pronounced and happening more frequently.

I assume that it is no big deal, and I will see my Dr. buddy when he gets back in town. Thanks for all of your thoughts. By the way Dan, we in Houston are Texans fans, not Cowboys fans.

Danny G.

hi Danny,

my experinece is like that of others who have posted... however during treatment i talked with a lady whose husband had this problem... for him, radiation had caused a problem with his carotid(sp?) artery. he had them bored out... so i had my checked with a sonar scan... they let blood thru like a freight train...

if you feel a need, talk to your doc about a scan. it's simple and not a big deal.

cu,
larryb

Danny,

Please let us know what you find out. I also had a brain scan when I first told my doctor.
If you find out it is other than low blood pressure please share the info.

How about those Spurs!!!!
Dinah

Larry,
Thanks...actually when I spoke to my cardiologist friend on the phone the first thing that he mentioned that he wanted to do after looking at the blood pressure and lab work on the blood was to check out the carotid arteries.

I appreciate all of the support, as always, and will keep you posted if I learn anything.

Danny G.

Very Interesting!!!

I never thought about the carotid arteries being effected by radiation. I may check into a scan as well. Thank you Larry!

Lynn

I have the exact same issue. To be perfectly honest, for a while it was scaring the shit out of me. Carotid hardening (and issues similar) are a by-product of radiation to the artery. You can get an ultrasound for cheap and that is the best way to find out if blood flow is an issue. I just had one last month and mine is 15% blocked, which is no big deal and that isn't my problem. I still have the problem, and have talked with all my docs about it and no one can put their finger on anything. I finally went to see an otologist who made a diagnosis of benign positional vertigo, which can come and go in people, and is an inner ear problem. Considering that, that part of our anatomy got some radiation being close to the field, there could be co-factors from that causing things. I saw a cardiologist, because this is also a symptom of left ventricle insufficiency, and after a treadmill that just about proved that I am in great shape for a 98-year-old woman, he concluded that that was also not an issue. I have heard this from several individuals who have chosen just to live with it. Me, I can't go there. I want to know what the mechanism is behind this, so I am still exploring. It's amazing to me how similar dig

Hi,

My husband, Jim, had the same problem after he was treated for tongue base scc (T3N2cM0) in September 2000. His internist said the condition is called "orthostatic hypotension," which is just doctor-speak meaning a drop in blood pressure when you stand up. He said it was caused by radiation damage to baroreceptors in his neck.

The way I understand it, the baroreceptors are supposed to sense the change in posture when you rise from a sitting or lying position and trigger a temporary rise in blood pressure to send more blood to you head.

The doctor prescribed Proamatine (midodrine) three times a day. That was very effective, but it tends to keep the blood pressure somewhat elevated at all times, and it was pretty expensive and no generic version available.

Last year, a Mayo Clinic study found that pyridostigmine, a drug commonly used to treat myasthenia gravis, was an effective treatment, with practically no side effects. Jim has been taking pyridostigmine for several months now, and it has controlled the dizziness and his blood pressure is normal.

Barb

Friends,
Thanks for the good information. I don't think that it will turn out to be anything serious, but, fortunately I have a good friend who is a radiologist and he has me scheduled today for an MRA ( angiogram ) at no cost. He thinks that it is best to at least look at the worst scenario first...serious blood flow blockage, and then take it from there. I imagine that it is something like what Barb and Brian discussed.

I'll let you guys know when I get results. Thanks again.

Danny G.

I am a big sissy! I went to the hospital where my buddy the radiologist arranged for me to have the MRA...Magnetic Resonance Arteriogram in the MRI machine. The tech, who was very nice, asked me if I was claustrophobic and I told him no. I had an MRI back when I was first diagnosed and survived it.

Well, when my turn came and he put me in that tube there was no way! I knew that I had to get out of that thing and I immediately started knocking and told him to let me out!

Since I drove myself they could not give me a valium or xanax, so I just had to blow it off. When my friend the radiologist gets back in town next week I think we will try something a bit easier, like ultrasound.

DG

Well Danny
One thing I have learnt over the past three years is that the more they do to you the worse the panic levels get.. all this rubbish about it gets easier as you do more... nonsense.. I'm sure they can see a yellow streak running through me now..
prayers.. love and hugs
Helen

Danny,

I've found I have to keep my eyes shut the whole time for an MRI -- from the time they start sliding me into the tube until they pull me out. Somehow when I do that I can trick myself into thinking I'm not in that tiny, enclosed space.

Cathy

Danny, you are not alone. Among all the tests, MRI is the one I fear most, although it didn't cause pain. Like Cathy, I had to close my eyes throughout the journey and imagined that I was in a beautiful and peaceful place. Even though I have no religion, I repeatedly prayed to God in my heart that I could get it over as soon as possible.
In response to your problem of equilibrium,low blood pressure may be a major cause but in my case, my bp is pretty normal and sometimes especially when I had it measured in the hospital, it was very high. I still experience what you do occasionally. Luckily the frequency has dropped. I feel dizzy when I sit in the sofa too long and try to walk to the kitchen. I have to stop for a moment and get hold of something before I can walk again otherwise I may fall. Anemia can be the cause but since it is not serious, I ignore it. Unlike Dinah, I only have such symptom after completing treatment and so I guess something in my body has been damaged by the radiation or chemo. I am also advised by doctors that we should not get up at once when we wake up. Lie on bed for a few minutes first before landing on the floor.

Karen.

Ok, I'll admit it - I take Zanax an hour before an MRI or PET scan. I figure it's better for all concerned to be as relaxed (and motionless) as possible.

I had a fair amount of equilibrium issues in the early post Tx, probably because of anemia, etc. but not much lately.

I remember my taking my mother to a series of MRI's. She told them she didn't want to "bother" them all day so just do them all at once. She spent 2 hours, 45 minutes in the tube. I saw a 300 lb gentleman coming out sweating and swearing he would never go back in that tube. He said 5 minutes was all he could take, even after the valium. My mother said she made up a song, sung to the tune of Oh my darling. The words were something like, "In the hole...in the hole...in the hole, I go..." She was fiesty, all 50 lbs!

Danny G, I still get that strange electric current like feeling down my spine when I stretch my neck to look down. It is much more pronounced when I am standing or walking. I posted something about it a while back and was relieved others experience it. I just wish I knew how to make it go away.

Ed

Not to hi-jack Danny G's post, but I wanted to respond to Ed. BTW, my equalibrium is pretty good -- no major problems. In any case, Ed, I get that shock feeling also when I look down and I spoke to my radiation oncologist about it a couple of weeks ago. He said it's a standard after-affect of the radiation treatment, although I don't remember the name of the syndrome. He also said to give it a year or so and there's a good chance it will go away. I've kind of gotten used to it -- one of the many aspects of the new "normal."

-Brett

Hello Everyone
My husband is experiencing the same equilibrium problems, Doc gave him some drugs for Vertigo which did not help much. Another Doc recommended an antihistamine as he seems to keep a lot of fluid in his ears, helps... a little.No one has ever mentioned the carotid artery to us..we will be sure to ask at next visit. Thanks for the info.
On the MRI stories, I always ask for an "OPEN" MRI
these have columns at each corner so you are not completely enclosed. If that is not available I take a face cloth with me and pop it over my face before going in the tube..what I cannot see is not there!