How is everyone?

[jolarson]

Anxious to see a new Neurologist soon after he reviews my medical history from my primary doctor and of course UCLA. I saw this doctor before and he put me through every test imaginable for days and weeks but could not diagnose. I've also sent him info on POT so it will be interesting to have a discussion with him. I still have his 20 page, single spaced typed evaluation that was extremely detailed. He was recommended to me by my eye doctor who has Parkinson's. I've mentioned before I was going to change doctor's, so I'll keep you updated. Happy Mother's Day......

[patty]

Hello to all our orhtostatic friends I just felt I needed to post about a recent encounter which I felt relevant to our complaint. I have made friends with a lady who is 70 years old and was telling me that when she stands for a long time ie; supermarkets etc she sometimes feels very light headed and faint to the extent where she has to sit down, now she does not have the symptoms that we all experience but the interesting thing was that she has spondylosis of the neck which I also have (found through xray). I have felt for some time that this could be contributing to my poor balance etc. My neck is particularly bad at the moment and so is my OT, therefore I have to question whether this is a factor of OT. Do any of you have neck problems if so I certainly recommend a scan or xray to determine whether or not this could be a symptom of OT.
I look forward to your response.
My very best wishes to you all, Patty

[Marianne]

I have not posted to the forum in a while. My stand time before tremors begin is about 7 seconds and walking has become a problem for me, especially when it requires that I walk more than I should be (tremors start to kick in). I become short of breath and need to sit to catch my breath. As soon as I feel better, I can get up and walk some more. When this happens at my doctor's office and my blood pressure is taken soon after this type of episode, the BP will be very high. By the end of my visit with the doctor, it has come down to almost a normal reading. A 24 hour BP monitoring was done recently and I passed!! At the neurologist yesterday, I mentioned the fact that I become short of breath when attempting to walk further than I should when tremors start. I would be happy to hear from anyone who sufers from these types of symptoms. Looking forward to hearing from you!
Kaylie

[stella R]

Hi Kaylee
Yes i too get very short of breath even walking around the house.
My BP goes very high when i am standing and goes down when i sit down.
We seem to have the same issues.
Grin and bear it i guess.
Regards
Stella

[Marianne]

Hello Stella
Thanks for responding to my query. I'm wondering are you taking any meds for the OT or for BP?

Kaylie

[gloria]

Hello everyone:
Kaylie & Stella brought to mind shortness of breath and it’s everyday presence throughout our average OT day. Our days are repeating stress /anxiety cycles which is the leading cause of shortness of breath. The resulting OT physical stress challenge causes us to take shallow/shorter breaths thus reducing normal oxygen intake. This causes additional stress and the feeling of exhaustion and when we finally sit down and “ we sit down hard” with heart pounding and feeling out of breath. Adrenaline input is part of this cycle as well. We must learn to breath deeply and fully, this will increase the oxygen intake to the brain and helps calm this fight or flight cycle.

I have been taking “ Chair Yoga” and part of the program is concentrating on deep, proper breathing exercises. It has helped me concentrate on my breathing no matter what I am doing.

Please note whether you have become a shallow breather . Would like to hear any of your thoughts and observations. Gloria

[jolarson]

Gloria, I've been trying to find a chair yoga class in my area to no avail. I'm still working on it. But, my real question is, lately I have noticed a change in my voice which is very confusing and appalling, to say the least. I have read that voice changing could be applicable to POT but wonder if anyone else is having this experience. I am going to a new doctor, and as usual he has never had a patient with POT. He did say that in his continuing education class for certification last September POT came up, so he had heard of it but with no real knowledge. He's putting me through a MRI of my spine because I feel like I have a constant motor running in me, like a vibration that is another mystery. Life goes on and new things show up like the voice changes. Anyone have this happen? As Mike says, "Keep smiling"...............

[gloria]

Joan: . All I know is that while voice tremor can occur on it’s own it is more likely to be accompanied with Essential Tremors and OT. There are treatments that a doctor could suggest. Maybe someone has had voice tremor problems and will respond with their experience I do not remember anyone posting about this situation before this. Good luck with your new doctor, keep us posted. Gloria

[DaveW]

Comments removed.

[Lake of the Woods]

Hello,
I recall my mother's voice changing when she was older - she did not have OT but the doctor said it was the medication that she was on.
He said some medication caused that unfortunately.
Peggy

[kate]

Hi Jo,

I read your post with interest. I also have the voice tremor. Not all the time but it pops up here an there. You also mentioned that you felt like you had a motor running. I also have that. I notice too that if I am touching something that vibrates my body seems to continue the vibration. I did read somewhere that sometimes the tremor can increase in speed and that may cause a motor feeling. It is a very annoying feeling. Please let us know what you find out. Good wishes.

Kate

[jolarson]

Kate - thanks for posting that you have the same problems, voice changing occasionally and the darn motor running feeling. I am still having tests and will keep you all updated. I am not very optimistic because there never seems to be any answers for this darn disease.

[gloria]

Joan and all our OT friends:
Although I have mentioned before on my experience page as well as the site we should not blame every experience we have on OT because we might be overlooking a health problem that has a treatment course for the problem. In the past 10 years besides the input on the website (2,152 posts) plus many hundreds of personal emails to me I have not had any complains of vibrations of the spine/OT. I hope your MRI has an answer. Keep walking, doing stretching excising before you get up in the morning and night as well, plus deep breathing to help cope with our stressful days. I would like to hear more from everyone if you can think of anything in your history that might have caused your OT, even something like a childhood sickness, flu shot, blow to the head, recurring respirator problems, viral infections, extreme stress etc. ………. to be continued, Gloria

[aussiepommy]

Hi All,
My opinion is that if we brush off our thinking that our symptoms are OT related and try and find another reason, we are cheating others and ourselves from learning about OT further. There has been so much written about some of these things that we are experiencing and it never would have been discovered if we had not sought out its relation to OT.
I myself have discovered research done by a Dr Bain in the UK that talks of an OT plus. This had somewhat put my mind at ease that i am not crazy and have got all sorts wrong with me. I have only got OT and with more symptoms than just Stand up and shake, sit down and its gone. I feel at ease now. Others may feel at ease if we can relate our thoughts on this without people saying we must seek out other things going on. I hope this is not offensive but i had to share because that is what it is all about, sharing so we can help each other.
God bless you all.

[owen-lynettepickles]

Hi to everyone
I believe my OT symptoms were exacerbated by having a full anaesthetic for an operation almost three years ago. While I had complained to the Doctor a couple of times previous to the operation about having a strange feeling in the tops of my legs, I was able to walk and stand without any problems. After the operation my legs never felt 'right' and I became very unsteady when standing. The Doctor changed the new blood pressure medication I had begun taking a month before the operation, thinking that may have been the cause, but it made no difference. Three months after the operation I had a particularly bad incident of losing my balance while bending down to pat the dog. After that the Doctor decided to seek further advice, but it was another six months before a Neurologist diagnosed OT. I am now very loathe to have any more operations and have turned down having a hysterectomy due to my fear that the anaesthetic will only make my condition worse. My Neurologist also said I have Essential Tremor of the head but did not know if it was related to the OT. Mean time, I just keep myself going. Can't let this thing beat me.
Warm regards from a very cold Chatham Islands. Lynette