How is everyone?

[stella R]

HI
I HAVE FOUND THAT I GET PAIN IN THE BACK OF MY NECK QUITE A LOT.
ESPICALLY WHEN I'M SITTING FOR A WHILE.
IT GOES AWAY WHEN I LIE DOWN.
GUESS WE ALL HAVE THESE DIFFERENT THINGS GOING ON.
STELLA

[DaveW]

Comments removed.

[patty]

Hi Dave, nice to hear from you again, I have just returned from holiday in Tenerife and like yourself have flown quite a bit, since this holiday my back has been horrendous and I know lots of us OT folk suffer from back problems, I usually put it down to the sun loungers or the extra walking we do on holiday, but who knows maybe there is some truth in this article, on the negative side, as I have said before my mom had OT and had never flown in her life. I also read an interesting article in the Daily Mail on Tuesday April 7th 2009 by Dr Martin Scurr, it was about blood supply to the nerves and because it was a bit lengthy would take some time to explain but you may be able to pick it up on the net, it would be in the good health section.
Take care, Patty

[DaveW]

Comments removed.

[Rose]

Hello

I'm new to this....having just been diagnosed with OT last week. I am blessed to be mobile with only occasional tremors. I have a caring husband, my faith and a good dose of humor. These are my best friends.

I was wondering if anyone had a history of migraine headaches or vertigo preceding their diagnosis.

I also see that some have had success with exercise i.e. riding bikes. Are their others that find exercising is beneficial and what type of exercises do you do?

I look forward to interacting with you and hope that you will do as Gloria suggested and put your location on your profile. Since the doctors don't have enough input for us, I think the more we can communicate, the more we can help one another.

Blessings to each of you,
Rose

[Chris]

Hi Rose
I find it interesting that you only have the occasional tremor.....mine started out as constant whenever I stood. They only have gotten worse in time in that I can only stand for a few seconds until I must sit down. When I sit or walk I am tremor free. I had benign positional vertigo for many years before and after I was diagnosed with OT. In 2005 the vertigo was so intense that it made my life quite miserable in fact and I tried quite a few treatments but mainly nothing really helped. Early in 2006 I developed an extremely bad cough and cold and after some severe coughing for about 3 weeks my vertigo suddenly disappeared. My doctor was amazed but came to the conclusion that the crystals in my inner ear causing the vertigo somehow shifted with all the horrible coughing. I have been vertigo free ever since but unfortunately still have tremors which have progressively worsened. I also had migraines earlier on in my 40's but once I reached menopause they too ceased.
Hope this helps a bit.....it is nice to have support. I know I couldn't do it without a lot of help from my husband, family and friends.
Take care
Chris

[Rose]

Thanks for your reply Chris.

I too had BPPV but no longer have it. But a migraine started along with it and has has never stopped. So I take daily medication for it.

I wonder does anyone else have occasional tremors? I can "walk off" my tremor but only have them several times a day. I walk 2 1/2 miles each morning just fine but when I stop, I usually have a tremor that goes away after several minutes. Then I have one when I get up from a seated position on occasion but not all the time.

Does anyone else have my situation?

Thanks,
Rose

[paradise]

Hi everyone
I have the same problem as all of you. I also try to be cheerful and busy. I use a cane that opens to a small chair and i find it very helpful. i cannot go to the suppermarket without i t or where i know that i have to stand. It is thanks to this site that was able to find a name to this problem. and i told the neurologists they really dont know much. I dont take any medication since i hear so many side effects. One dr wanted to give me Topamax but i am afraid to start. Yes i had vertigo once. Is walking helpful ? Thanks Gloria for this site. It helps a great deal to know that you are not alone.

Paradise

[Betty]

Hello everyone!

First Amy, thanks for the information regarding your trip to NY; I will try to find it and read your post.

Rose, you wrote:

I was wondering if anyone had a history of migraine headaches or vertigo preceding their diagnosis.

I had migraine headaches for years; some very severe ~ but after about the age of 45, they seemed to disappear. I would only get one every now and again. Now I rarely have one.

Regarding vertigo ~ I had "motion sickness" when I was a child ~ never thought of it as vertigo; but it is now chronic. So..I had this long before I knew I had OT ~ never thought there might be a connection. Mine is not every now and again, it is a constant with which I must cope on a daily basis. I can not move my head quickly, lean over, look up or down or turn over in bed. I am just very careful ~ between OT and vertigo ~ I seem to be doing quite a balancing act!

I am sending you a link which you might find of interest. It is regarding procedures to help BPPV:

Benign PAROXYSMAL Positional Vertigo

http://www.dizziness-and-balance.com/di ... /bppv.html

It will give you a lot of information regarding vertigo and procedures which can help.

I have had the Semont and Epley Procedure done twice and one referred to as the Canalith Repositioning Procedure done once. They are the same; not fun, but do seem to help for a while. I must call and schedule another soon.

Rose, you also asked about exercising; I know that is one of the best things we can do to keep our muscles as strong as possible ~ especially our core muscles and leg muscles. I am a "rare" one who has problems trying to exercise; even though I am sitting. I can use a treadmill, but walking outside does not stop my tremors; and because I have problems lifting my legs, I stumble ~ so I don't go out walking alone. If you can exercise ~ do so; it will keep you strong!

Paradise, you mentioned your doctor would like to put you on Topamax; I have tried a "laundry list" of medications and Topamax was one of them. It probably had the most severe side effects for me of any. After only a few days taking it I was becoming depressed and anorexic. I called the doctor, told his office staff what was happening and asked if I could stop taking it. I never received a call back. Because my mine was muddled ~ I didn't follow up and continued taking it for two weeks, until my next visit.

By that time, I was becoming more depressed ~ and that is not me ~ and I had lost 14 pounds. I questioned his nurse when she came in to question me and I asked if there was any note of my call and the problems I was having. She told me there was and a note from the doctor to stop the medication IMMEDIATELY!

I told her NO ONE had called to tell me this. By the time the doctor came in, he said, "I understand you are a little upset with me." I said, "That doesn't even BEGIN to cover how I feel right now." It took me another two weeks to get off the meds and about three months for it to get out of my system and for me to begin to feel normal again. Some people have had success with Topamax, but not me.

Well, I think I have written way too much again, but thought it might be helpful to know we all have so much more in common than we realize.

I hope all of you are having a good day; and tomorrow will be even better.

Betty

[jolarson]

Betty, I have written about taking Topomax too and I had horrible side effects. Repeating what happened was that after 3 days my memory just went out the window!!! I couldn't spell elementary words, remember peoples names etc. I called my doctor and was taken immediately off them. She said that memory loss was a typical side effect. She had told me that I may loss weight on Topomax but I didn't get that far in to taking them for that effect. However my daughter had taken Topomax for 3 years for migraines with help. She did have weight loss which she didn't need, being very slight normally. But then she broke her foot twice in 2 months and her bone density was very bad after the years of taking Topomax. Her doctor took her off the drug and she suffered terrible withdrawals and has to take supplements for building her bones back. Everyone is different but when I was on it I really thought that senility had started!!!! I also have mentioned that I cannot stand for more than 2 seconds. I have always been very social and it sure inhibits any kind of circulating that one does at parties or any kind of gatherings. I do have a cane seat that I take with me but sometimes it is inconvenient. Being a widow and alone doesn't help. But I still know that it could be so much worse, count my blessings and find something that makes me smile or laugh every day. And I always check this wonderful site to see how all of you, my POT friends are coping.

[stella R]

HI JORALSON,
SOUNDS LIKE YOU ARE REALLY DOING YOUR BEST TO COPE WITH THIS DISEASE.
HAVE YOU TRIED A WALKER WITH A SEAT.
BECAUSE YOU ARE ALONE IT COULD
REALLY HELP YOU WITH SHOPPING.
YES WE ARE VERY LUCK TO HAVE THIS SITE THANKS TO GLORIA AND JEFF.
YOU CAN EMAIL ME ANYTIME IF YOU WISH TO CHAT.
TAKE CARE
STELLA

[Rose]

Thanks Jolarson and Betty for your reply.

I have done the exercises for BPPV with some success but my ENT has not ruled out Meniere's disease yet. So that is on hold until I get the OT under control. I have been on Topamax since the onset of vertigo 18 mos ago. It really helps my headaches. I haven't had any bad side effects except being tired.

I do wish the OT members would be more active on the board but I understand some just don't have the time or feel like it. I do think we can be a great support for each other. We are the only ones who truly understand the problems we each deal with daily. That makes such a difference to me.

I still wonder if at the onset of OT did any of you have occasional tremors or were they always constant?

Thanks,
Rose

[stella R]

Hi ROSE,
I HAD VERY BAD LEGG CRAMPS BEFORE MY OT SET IN.
WHEN I GOT ON GABAPENTIN THE CRAMPS STOPPED.
WHAT A BLESSING THAT WAS
TAKE CARE
STELLA

[ALC]

Hi Rose,

When I first noticed my tremors, I told the first neurologist I saw that I thought they were exercise induced. I didn't necessarily associate it with standing. I would go for a hike and be fine, but unable to stop and enjoy the view at the end because I'd have to sit down due to the tremors. I later learned that since adrenaline exacerbates the condition, lengthy or extreme exercise can bring on the tremors. I guess in this sense my tremors could at first be described as "occasional". But I also noticed tremors when I was nervous, like making a speech in front of a crowd. When I stood for a long time (without exercise or nervousness), my legs would tire. Then slowly over time the tired feeling turned into a tremor that became more severe. Onset became quicker and I could stand for noticeably shorter time.

I also have struggled with either vertigo or dizziness that I had attributed to allergies. Finally an ENT told me that he could see tremors (not fluid) in my ears. There is a muscle in your ear that closes to prevent damage to the eardrum in the event of exposure to a loud noise. That muscle tremors in my ears. I was not classified as having vertigo since I do not (recently at least) have full blown spinning. I have more of what Betty describes. A sense that when I move my head quickly I lose my balance/focus.

I had surgery Thursday (for another issue) and since having anesthesia I have been struggling with pains, cramps and tiredness in my legs. Hopefully not another chapter in my OT adventure. I think I recall some of you having leg cramps and muscle pain.

Amy

[gloria]

Hello everyone: It is so great to see how everyone is there for each other! I have one wish and that is the next time we have a meeting that you will all try your darnest to attend. It is worth the stress that traveling is for all us. I'm pleased to see that most of you are keeping your other health issues separate from our OT and are trying to find ways of treating them. However, I just wanted to jump in and try to answer Rose's question "I still wonder if at the onset of OT did any of you have occasional tremors or were they constant?" When we first notice that we are having a strange problem with our legs it starts as it is described at the beginning of our homepage " what is orthostatic tremors" . It is not an occasional event, it happens everytime we take a standing position in both legs and when we sit or start to walk the tremors abate. Were you given a non-invasive EMG of your legs to determine the frequency of your tremors? Rose, you are one of our very new members and I know that as you learn to maneuver through all the different areas of topics of the Forum you will see how we have learned to cope and hope this will help you too. As always, Gloria