Hi
I went to the clinic to day re another of my conditions.We got chatting about my 'teddy bear legs' My Doc was interested,hes not a neuroligist ,he took my BP and then asked me to stand up and then took BP again and said it was lower when standing which is unusual it is meant to be higher .He diagnosed it as Orthostatic Hypotension. I asked how he knew I would have lower BP and he just said it was hunch He also said he would discuss it with my neuroligist So I visted this website http://www.dizziness-and-balance.com/di ... tatic.html .Makes interesting reading.
Anybody else been diagnosed with this?
Interesting New Diagnosis
Moderator: gloria
Interesting New Diagnosis
Last edited by MikeS on Sat Apr 19, 2008 10:39 am, edited 1 time in total.
Re: Interesting New Diagnosis
Not clear, Mike - do you mean Hypo or Hyper (as you have written).MikeS wrote:Hi
I went to the clinic to day re another of my conditions.We got chatting about my 'teddy bear legs' My Doc was interested,hes not a neuroligist ,he took my BP and then asked me to stand up and then took BP again and said it was lower when standing which is unusual it is meant to be higher .He diagnosed it as Orthostatic Hypertension. I asked how he knew I would have lower BP and he just said it was hunch He also said he would discuss it with my neuroligist So I visted this website http://www.dizziness-and-balance.com/di ... tatic.html .Makes interesting reading.
Anybody else been diagnosed with this?
Richard
Re: Interesting New Diagnosis
Hypo sorry 
Re: Interesting New Diagnosis
HI Mike
I have a problem with low blood pressure.
On 3 occasions i have passed out.
mine dropped from 145 70 to 69 40 in a very short time
It is a very scarry feeling.
oxygen has to be given immediately.
I am concerned about surgury.
I wonder if more of us have this problem
stella
I have a problem with low blood pressure.
On 3 occasions i have passed out.
mine dropped from 145 70 to 69 40 in a very short time
It is a very scarry feeling.
oxygen has to be given immediately.
I am concerned about surgury.
I wonder if more of us have this problem
stella
Re: Interesting New Diagnosis
I certainly don't fit into this category. If anything, my BP is on the high side, and standing up (or trying to) sends it even higher.stella R wrote:HI Mike
I have a problem with low blood pressure.
On 3 occasions i have passed out.
mine dropped from 145 70 to 69 40 in a very short time
It is a very scarry feeling.
oxygen has to be given immediately.
I am concerned about surgury.
I wonder if more of us have this problem
stella
Richard
Re: Interesting New Diagnosis
Stella
My doctor thinks there is a connection...did you check out the website link? It refers to Orthostatic Tremor.
Mike
My doctor thinks there is a connection...did you check out the website link? It refers to Orthostatic Tremor.
Mike
Re: Interesting New Diagnosis
Hi Mike,
I have not been officially diagnosed with this (in addition to the OT) but I definitely have it. I also have issues with anemia so they've been blaming the lightheadedness on that. Nurses always take your blood pressure once, when you are sitting down. But when I have been sitting for a while and get up too quickly my blood pressure drops which immediately makes my heart pump faster and harder. I am a small person so you can see the heartbeats. Others can even feel the rapid beats (for example if I get up to hug a relative at the holidays). As with OT some days are worse than others. Worse if I am nervous or dehydrated or low blood sugar or tired. I was diagnosed at Yale with OT, tremors in my face, jaw, and inner ear which can affect my speech. I was told these tremors are related to my OT. When the heartbeats are bad and I am experiencing ear spasms I can hear my heartbeat in my ear. This can all make me dizzy and have blurry vision. I know there is a connection. You are not alone.
Amy
I have not been officially diagnosed with this (in addition to the OT) but I definitely have it. I also have issues with anemia so they've been blaming the lightheadedness on that. Nurses always take your blood pressure once, when you are sitting down. But when I have been sitting for a while and get up too quickly my blood pressure drops which immediately makes my heart pump faster and harder. I am a small person so you can see the heartbeats. Others can even feel the rapid beats (for example if I get up to hug a relative at the holidays). As with OT some days are worse than others. Worse if I am nervous or dehydrated or low blood sugar or tired. I was diagnosed at Yale with OT, tremors in my face, jaw, and inner ear which can affect my speech. I was told these tremors are related to my OT. When the heartbeats are bad and I am experiencing ear spasms I can hear my heartbeat in my ear. This can all make me dizzy and have blurry vision. I know there is a connection. You are not alone.
Amy
Re: Interesting New Diagnosis
Hello all,
I wanted to add my experiences to what Mike discussed ~ Orthostatic Hypotension. I have had high B/P for over 25 years and have taken many different medications to control it. The last I was on was Inderal (which is also suggested for OT); but it did nothing for my tremors.
For several months my B/P has been low, so my Internist had me reduce my Inderal (B/P med) from twice daily to once, then nothing ~ over a period of time. Now my B/P is still very low.
Mike you said your doctor took your B/P while sitting, then had you stand and it dropped; you said he found that unusual. My doctor has taken my B/P while lying on the exam table, then while sitting, then standing. It will change with each position. I was told it usually drops when going from a lying or sitting position to standing; that is what happens to me.
Amy, I must agree with you, there are times when I can FEEL my heart beating and could take my pulse without touching any pulse points; yet my pressure is low.
Mike, I checked the link you added and scanned it; found it interesting and will go back and read it more in depth a bit later.
It did mention vestibular disorders, such as positional vertigo ~ I also have that so my balance is quite unsteady. I have had two procedures done; the Epley/Semont maneuver as well as one referred to as a Canalith Repositioning. They are much the same and very disorienting. It did help the vertigo for a while, but I feel I should have it done again because my vertigo is back ~ a double "whammy" when it comes to the balancing act we all must do.
I have tried almost all the medications others have taken; but I am unable to tolerate them ~ too many side effects for me.
I have tried Mysoline (primidone), Neurontin (gabapentin) Lyrica, Topamax, Mirapex and Klonopin (clonzepan); which is the one I am taking presently. I take one 2mg tablet in the a.m. and one 2mg tablet in the p.m. It helps a little, but not as much as Neuronton helps those who can tolerate it.
Stella, we have "chatted" and I was looking forward to meeting you in Rochester; sorry you were unable to make it.
Richard, I have read your postings and hope you have much success in getting a group together in the UK. It is wonderful to be able to meet someone "just like you" and KNOW they understand exactly what you are feeling and saying.
Mike, my husband Paul and I attended the meeting in Rochester, but I am not sure you know who I am; we didn't get to talk very much. I have read, with interest, your postings and hope you have been successful stopping the Neurontin. You said you would rather put up with your "teddy bear legs" than the ill effects of the medication.
Good luck to all; and try to keep a positive attitude!
Betty
I wanted to add my experiences to what Mike discussed ~ Orthostatic Hypotension. I have had high B/P for over 25 years and have taken many different medications to control it. The last I was on was Inderal (which is also suggested for OT); but it did nothing for my tremors.
For several months my B/P has been low, so my Internist had me reduce my Inderal (B/P med) from twice daily to once, then nothing ~ over a period of time. Now my B/P is still very low.
Mike you said your doctor took your B/P while sitting, then had you stand and it dropped; you said he found that unusual. My doctor has taken my B/P while lying on the exam table, then while sitting, then standing. It will change with each position. I was told it usually drops when going from a lying or sitting position to standing; that is what happens to me.
Amy, I must agree with you, there are times when I can FEEL my heart beating and could take my pulse without touching any pulse points; yet my pressure is low.
Mike, I checked the link you added and scanned it; found it interesting and will go back and read it more in depth a bit later.
It did mention vestibular disorders, such as positional vertigo ~ I also have that so my balance is quite unsteady. I have had two procedures done; the Epley/Semont maneuver as well as one referred to as a Canalith Repositioning. They are much the same and very disorienting. It did help the vertigo for a while, but I feel I should have it done again because my vertigo is back ~ a double "whammy" when it comes to the balancing act we all must do.
I have tried almost all the medications others have taken; but I am unable to tolerate them ~ too many side effects for me.
I have tried Mysoline (primidone), Neurontin (gabapentin) Lyrica, Topamax, Mirapex and Klonopin (clonzepan); which is the one I am taking presently. I take one 2mg tablet in the a.m. and one 2mg tablet in the p.m. It helps a little, but not as much as Neuronton helps those who can tolerate it.
Stella, we have "chatted" and I was looking forward to meeting you in Rochester; sorry you were unable to make it.
Richard, I have read your postings and hope you have much success in getting a group together in the UK. It is wonderful to be able to meet someone "just like you" and KNOW they understand exactly what you are feeling and saying.
Mike, my husband Paul and I attended the meeting in Rochester, but I am not sure you know who I am; we didn't get to talk very much. I have read, with interest, your postings and hope you have been successful stopping the Neurontin. You said you would rather put up with your "teddy bear legs" than the ill effects of the medication.
Good luck to all; and try to keep a positive attitude!
Betty
Re: Interesting New Diagnosis
What an interesting post, Betty. I have an unusual medical past as well, which goes something like this:-
In 1982 I got shingles of the inner ear, and ended up in the neurological ward of the Radcliffe Infirmary in Oxford - possibly the best known in the country at that time. One of the symptoms of the shingles was loss of balance; there were many other terrifying ones as well, including double vision (sometimes seeing things upside down!), facial paralysis, loss of hearing, taste, sense of smell, etc. etc. All these got better over time, except the vertigo, which is still with me, and with which I have learned to live.
No-one has been able to help me with the vertigo. No medic has ventured an opinion as to whether it caused the OT, or merely contributed to it. Clearly it's all down to me. I too had an ear operation to try to control it, and I fell within the 30% who did not respond. Defenestration, I think they called it.
If anyone else has got any ideas in regard to the connection with OT, please let me know!
Best
Richard
In 1982 I got shingles of the inner ear, and ended up in the neurological ward of the Radcliffe Infirmary in Oxford - possibly the best known in the country at that time. One of the symptoms of the shingles was loss of balance; there were many other terrifying ones as well, including double vision (sometimes seeing things upside down!), facial paralysis, loss of hearing, taste, sense of smell, etc. etc. All these got better over time, except the vertigo, which is still with me, and with which I have learned to live.
No-one has been able to help me with the vertigo. No medic has ventured an opinion as to whether it caused the OT, or merely contributed to it. Clearly it's all down to me. I too had an ear operation to try to control it, and I fell within the 30% who did not respond. Defenestration, I think they called it.
If anyone else has got any ideas in regard to the connection with OT, please let me know!
Best
Richard
Re: Interesting New Diagnosis
Hi Richard,
I have never experienced shingles, but understand they are very painful.
I have had "motion sickness" problems since I was a child; it was very difficult riding in the back seat of the car. It wasn't true vertigo as a child, but as a young adult, I did experience vertigo from time to time; now it is a constant part of my life.
I went to an ENT and was given extensive testing and was found to have Positional Vertigo. I did have several maneuvers, as I mentioned earlier, and it did help. Since you have not been able to find any relief, you might find an ENT, ask to be tested for Positional Vertigo. If you go to the link Mike added, go to the link for Positional Vertigo and it will explain fully about this problem and what may help.
Just trying to cope with OT and the balance problems involved; when one must also learn to cope with vertigo ~ it is a real challenge ~ but it can be done.
Don't give up ~ read Mike's link and perhaps try an ENT for help.
Good luck and keep us posted.
Betty
I have never experienced shingles, but understand they are very painful.
I have had "motion sickness" problems since I was a child; it was very difficult riding in the back seat of the car. It wasn't true vertigo as a child, but as a young adult, I did experience vertigo from time to time; now it is a constant part of my life.
I went to an ENT and was given extensive testing and was found to have Positional Vertigo. I did have several maneuvers, as I mentioned earlier, and it did help. Since you have not been able to find any relief, you might find an ENT, ask to be tested for Positional Vertigo. If you go to the link Mike added, go to the link for Positional Vertigo and it will explain fully about this problem and what may help.
Just trying to cope with OT and the balance problems involved; when one must also learn to cope with vertigo ~ it is a real challenge ~ but it can be done.
Don't give up ~ read Mike's link and perhaps try an ENT for help.
Good luck and keep us posted.
Betty
Re: Interesting New Diagnosis
Very many thanks for this, Betty. And to Mike, for the link. All symptoms quoted match with what I'm experiencing. I take it that the US version of ENT means the same as ours: Ear Nose and Throat?
Best
Richard
Best
Richard
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Chris
- Posts: 91
- Joined: Sun Dec 26, 2004 2:28 pm
- Location: Okanagan Valley, British Columbia, Canada
Re: Interesting New Diagnosis
Hi all
Just thought I would put my thoughts into this conversation as well. My first attack of vertigo was in 1993...long before I was aware of any leg tremors. I had some pretty severe episodes lasting anywhere from a few weeks to several months. I was diaganosed with benign postional vertigo by an ENT doctor at that time and was told that I probably would continue to get attacks and that they could increase in intensity. Sometimes I would experience the vertigo for 6 months at a time but would manage to get on with things after the first few days. When my tremors started increasing in intensity in 2004 i also noticed an increase in the vertigo attacks and I almost constantly felt dizzy. I did see an ENT again quite a few times and she tried to help me best she could with the rapid positioning, etc. Nothing seemed to work and I had resigned myself to always feeling dizzy as well as shaking. Then something quite extraordinary happened in the spring of 2005. I developed a severe case of bronchitis and had a terrible cough. I have never coughed so hard in my life. One day while lying in bed feeling deathly ill I suddenly came to the realization that I did not feel dizzy. I was almost afraid to hope.....could the vertigo be gone? Once I recovered from the sickness I was relieved that it was still gone. For the next year I kept waiting for it to rear its ugly head but it never did and to this day (touch wood) it has never returned.....not even a short dizzy spell. Needless to say my doctors were quite amazed and pleased for me and their diagnosis is whatever was moving around in the inner ear was put right by my horrendous coughing ...or something like that.....not sure of all the medical jargon. I do find it a lot easier to cope with my tremors without the sickening dizziness and I really feel for anyone who does. Hope this didn't bore you too much but I do find it very interesting that so many people with OT do suffer from vertigo as well.
Take care and hang in there
Chris
Just thought I would put my thoughts into this conversation as well. My first attack of vertigo was in 1993...long before I was aware of any leg tremors. I had some pretty severe episodes lasting anywhere from a few weeks to several months. I was diaganosed with benign postional vertigo by an ENT doctor at that time and was told that I probably would continue to get attacks and that they could increase in intensity. Sometimes I would experience the vertigo for 6 months at a time but would manage to get on with things after the first few days. When my tremors started increasing in intensity in 2004 i also noticed an increase in the vertigo attacks and I almost constantly felt dizzy. I did see an ENT again quite a few times and she tried to help me best she could with the rapid positioning, etc. Nothing seemed to work and I had resigned myself to always feeling dizzy as well as shaking. Then something quite extraordinary happened in the spring of 2005. I developed a severe case of bronchitis and had a terrible cough. I have never coughed so hard in my life. One day while lying in bed feeling deathly ill I suddenly came to the realization that I did not feel dizzy. I was almost afraid to hope.....could the vertigo be gone? Once I recovered from the sickness I was relieved that it was still gone. For the next year I kept waiting for it to rear its ugly head but it never did and to this day (touch wood) it has never returned.....not even a short dizzy spell. Needless to say my doctors were quite amazed and pleased for me and their diagnosis is whatever was moving around in the inner ear was put right by my horrendous coughing ...or something like that.....not sure of all the medical jargon. I do find it a lot easier to cope with my tremors without the sickening dizziness and I really feel for anyone who does. Hope this didn't bore you too much but I do find it very interesting that so many people with OT do suffer from vertigo as well.
Take care and hang in there
Chris
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Chris
- Posts: 91
- Joined: Sun Dec 26, 2004 2:28 pm
- Location: Okanagan Valley, British Columbia, Canada
Re: Interesting New Diagnosis
Hi again
I reread what I submitted last night....must have been too tired. My vertigo stopped in the Spring of 2006....so I have been dizzy free for 2 years now. Still have fingers crossed.
Take care
Chris
I reread what I submitted last night....must have been too tired. My vertigo stopped in the Spring of 2006....so I have been dizzy free for 2 years now. Still have fingers crossed.
Take care
Chris
Re: Interesting New Diagnosis
Hi Richard,
You are correct ~ ENT is the same here in the US as in the UK ~ it does mean ear, nose and throat. As I mentioned earlier, I have had several procedures for my vertigo. They helped, but I feel I should have the procedure done again because my vertigo is back.
Chris, I can certainly relate to what you are saying, I have dealt with vertigo for many, many years; and now with OT, my balance is very poor, but I cotinue to learn ways of coping. Good luck to you and I hope your vertigo does not return.
Betty
You are correct ~ ENT is the same here in the US as in the UK ~ it does mean ear, nose and throat. As I mentioned earlier, I have had several procedures for my vertigo. They helped, but I feel I should have the procedure done again because my vertigo is back.
Chris, I can certainly relate to what you are saying, I have dealt with vertigo for many, many years; and now with OT, my balance is very poor, but I cotinue to learn ways of coping. Good luck to you and I hope your vertigo does not return.
Betty