My father has been diagnosed with multiple myeloma and is currently in remission. He also had a tumor found to be cancerous on his spine. Before it went into remission he was given 26 radiation treatments and 6 chemo treatments. Since then he has spent almost five weeks in the hospital through other complications that they say is a result of the multiple myeloma.
The thing that is keeping him there, and even when he came home for 3 days, he was right back there after collapsing when standing, is the constant dizziness and blacking out he is feeling every day for the last 5 to 6 weeks.
His blood pressure is up and down like crazy and usually when he tries to stand for even a short time it drops real low and he blacks out.
They are trying to run different tests to determine what is causing this constant dizziness and lack of any quality of life for him.
Does anyone have any similar experience with this they could share that would help give me some information that could help him!!!! I would so appreciate any help he is soooo miserable with this dizziness!
Forums
6 posts
• Page 1 of 1
Re: Dizziness after multiple myeloma diagnosis & treatment
Your dad must be so frustrated! I wrote a column about this a few weeks back... My dizzyness or vertigo, as it is often called, was caused by the combination of a drug I was taking and lots of radiation the doctors were using to try and reduce tumors in and around my spine. Sounds like your father's is caused by something else. Hard when no one can figure out why! Myeloma does some wierd things to a person's body that doesn't always show up in tests. Hopefully in time your father's system will adjust. Not the answer you or he wants. Bet they will get it figured out soon. Good luck! Pat
-
Pat Killingsworth - Name: Pat Killingsworth
- Who do you know with myeloma?: I am a multiple myeloma patient
- When were you/they diagnosed?: April, 2007
- Age at diagnosis: 51
Re: Dizziness after multiple myeloma diagnosis & treatment
Several of our Facebook fans have posted comments on Facebook about this discussion:
My husband does [have a similar experience with dizziness], but he is taking Revlimid, which will cause that also, though he also had some dizziness before he started chemo as well.
Anemia causes dizziness, and anemia is very common for myeloma patients.
Re: Dizziness after multiple myeloma diagnosis & treatment
I was diagnosed 3 years ago with multiple myeloma. I have had many round with different treatments. I am currently on a clinical trial and have had severe dizziness. Sometimes I can hardly walk. Has anyone experienced this problem?
-
Henry Weiner
Re: Dizziness after multiple myeloma diagnosis & treatment
Hi can anyone give me any advice as my mum also has multiple myeloma and is suffering with dizziness she's had radiotherapy and chemo. But is now back in hospital again as she passed out and cut her head open at the weekend. She's so weak and frustrated as she is dizzy when she tries to get out of bed. Please can anyone tell me if they know what causes this. Thank you
-
Sue dude
Re: Dizziness after multiple myeloma diagnosis & treatment
Davedawg21,
What is happening to your father and what happened to me when I was receiving induction therapy in 2011 may be the same thing or nearly the same thing.
I started treatment with Velcade and dexamethasone (40 mg once a week) just after I was diagnosed with myeloma in 2011. Over the next few months I developed a pretty bad case of peripheral neuropathy that I now realize was worse than most people get from Velcade. It extended up to just below my knees and food was starting to lose taste. I was feeling pretty weak and fatigued but not dizzy.
On July 4th, while standing and brushing my teeth in the bathroom, I blacked out and collapsed to the floor. I was out cold for about 30 seconds and woke up not knowing where I was. It was unsettling to me as I had been feeling tired but blacking out this hard had never happened to me and seemed to come out of nowhere.
I should have gone into the hospital but did not. A week later I collapsed to the floor in my garage suddenly, my legs just fell out from under me. I managed to get up and make it into my house and rested on the couch for a few minutes. I had been losing my appetite and not eating a lot so I thought the problem must be that I was not eating enough and getting weak. I felt rested and got up to go to the kitchen and blacked out again in the kitchen. Now I was really scared about what was going on, blacking out twice just a few minutes apart. I got back to the couch and called my brother who took me to the hospital.
It was found that I had developed an orthostatic blood pressure condition. If I was laying flat on my back my blood pressure was normal, 110 over 70 for example, and I felt fine. Sitting up my blood pressure was about 95 over 48 and I still felt OK. When I stood up the machine had difficulty getting a blood pressure reading, but it was typically about 72 over nothing (could not be read) and my pulse would soar and I would start to hyperventilate. I would turn ghostly white and need help to stand.
Normally when we stand up there are muscles that surround the blood vessels in our legs that contract to squeeze the blood vessels and prevent the blood rushing into our legs so we do not black out. This had stopped happening in me.
They did know why I had orthostatic blood pressure and I was hospitalized since I was a significant fall risk. Their first assumption, which is probably true for most people, was that I was dehydrated. They ran the IV machines max out for three days but I knew dehydration was not the problem, I had been drinking a lot of water while I was on chemo, they told me to.
Next they suspected maybe my adrenal gland had shut down and stopped working after having been on high dose dexamethasone for so long. The adrenal gland is involved in the regulation of blood pressure. I started being seen by some endocrinologist specialist. They ran a CAT scan and gave me some injections and other oral drugs to stimulate a response from my adrenal gland and ran some test to see if it was functioning. The CAT scan showed a benign node on my gland, which was not that unusual, and my adrenal gland was working just fine.
They concluded that the cause of my orthostatic blood pressure was likely from Velcade damage to the part of my peripheral nervous system that controls blood pressure and those muscles that surround the blood vessels in my legs. No tests were run to prove this and I do not know if there are any test readily available that could.
Velcade and dexamethasone were stopped immediately and I have not taken either of those drugs since. The only thing that could be done was to wait and see if my blood pressure regulation would come back and I was told there was a possibility it may not and this could be a permanent condition for the rest of my life.
Over the next couple of days I eventually was able to maintain a blood pressure of about low 90s over 60 when standing and they reluctantly released me to go home. Over the next few months my blood pressure slowly returned to my normal values at the same time the neuropathy in my lower legs subsided and food taste came back.
My experience sounds really similar to what your father is experiencing right now. I would ask to have him tested for orthostatic blood pressure. This can be done by simply measuring the blood pressure lying down, sitting, and standing. More complicated testing can be done by with a special bed that can be tilted to different angles. I think it would be good to not ignore this and have it looked into to, it could be serious and need immediate attention.
What is happening to your father and what happened to me when I was receiving induction therapy in 2011 may be the same thing or nearly the same thing.
I started treatment with Velcade and dexamethasone (40 mg once a week) just after I was diagnosed with myeloma in 2011. Over the next few months I developed a pretty bad case of peripheral neuropathy that I now realize was worse than most people get from Velcade. It extended up to just below my knees and food was starting to lose taste. I was feeling pretty weak and fatigued but not dizzy.
On July 4th, while standing and brushing my teeth in the bathroom, I blacked out and collapsed to the floor. I was out cold for about 30 seconds and woke up not knowing where I was. It was unsettling to me as I had been feeling tired but blacking out this hard had never happened to me and seemed to come out of nowhere.
I should have gone into the hospital but did not. A week later I collapsed to the floor in my garage suddenly, my legs just fell out from under me. I managed to get up and make it into my house and rested on the couch for a few minutes. I had been losing my appetite and not eating a lot so I thought the problem must be that I was not eating enough and getting weak. I felt rested and got up to go to the kitchen and blacked out again in the kitchen. Now I was really scared about what was going on, blacking out twice just a few minutes apart. I got back to the couch and called my brother who took me to the hospital.
It was found that I had developed an orthostatic blood pressure condition. If I was laying flat on my back my blood pressure was normal, 110 over 70 for example, and I felt fine. Sitting up my blood pressure was about 95 over 48 and I still felt OK. When I stood up the machine had difficulty getting a blood pressure reading, but it was typically about 72 over nothing (could not be read) and my pulse would soar and I would start to hyperventilate. I would turn ghostly white and need help to stand.
Normally when we stand up there are muscles that surround the blood vessels in our legs that contract to squeeze the blood vessels and prevent the blood rushing into our legs so we do not black out. This had stopped happening in me.
They did know why I had orthostatic blood pressure and I was hospitalized since I was a significant fall risk. Their first assumption, which is probably true for most people, was that I was dehydrated. They ran the IV machines max out for three days but I knew dehydration was not the problem, I had been drinking a lot of water while I was on chemo, they told me to.
Next they suspected maybe my adrenal gland had shut down and stopped working after having been on high dose dexamethasone for so long. The adrenal gland is involved in the regulation of blood pressure. I started being seen by some endocrinologist specialist. They ran a CAT scan and gave me some injections and other oral drugs to stimulate a response from my adrenal gland and ran some test to see if it was functioning. The CAT scan showed a benign node on my gland, which was not that unusual, and my adrenal gland was working just fine.
They concluded that the cause of my orthostatic blood pressure was likely from Velcade damage to the part of my peripheral nervous system that controls blood pressure and those muscles that surround the blood vessels in my legs. No tests were run to prove this and I do not know if there are any test readily available that could.
Velcade and dexamethasone were stopped immediately and I have not taken either of those drugs since. The only thing that could be done was to wait and see if my blood pressure regulation would come back and I was told there was a possibility it may not and this could be a permanent condition for the rest of my life.
Over the next couple of days I eventually was able to maintain a blood pressure of about low 90s over 60 when standing and they reluctantly released me to go home. Over the next few months my blood pressure slowly returned to my normal values at the same time the neuropathy in my lower legs subsided and food taste came back.
My experience sounds really similar to what your father is experiencing right now. I would ask to have him tested for orthostatic blood pressure. This can be done by simply measuring the blood pressure lying down, sitting, and standing. More complicated testing can be done by with a special bed that can be tilted to different angles. I think it would be good to not ignore this and have it looked into to, it could be serious and need immediate attention.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
6 posts
• Page 1 of 1