Thank you for all of your input and replies. They were very helpful. I have thryroid disease and when my ataxia was starting he had read that the movement could be caused by the thyroid so he decreased my dosage. That is where it started. I went in for blood work today. I hope that is what the problem is.
Blessings
Randy
Ladies, I am pleased to say the sauce was yummy, but probably will never be replicated!
This must be an awfully big boat we're all in, navigating choppy waters!
I was first really aware of this around 1998, and am still trying to get my sea legs!
Hi boat2011,
By the time you read this I sincerely hope you feel less exhausted. Fatigue was one of the first things
I noticed, it does take a toll, eventually it got onto an even keel. 3yrs ago I had a massive arguement/
crying spell with my husband, it was over something trivial but just tipped me over. Everything came
out about how I was feeling and trying to cope. Up till then I think he just thought I was being difficult,
and depressed. I cried like never before, but afterwards felt such a sense of release. Sometimes it's
just what you need to relieve stress and tension.
I'm so glad you've joined this site, everyone will support you. Best wishes Beryl
boat2011 said:
thank you Rose,
I really appreciate your support and the information you have provided me. I will check with my doctor. I am back in bed today. In the office I have told what is going on and my intention to leave the job. I am exhausted and I cannot sleep either. I am feeling so bad I feel strength is just leaving me today......It's a big decision and change. I have been crying all day. Thank you for your support, I need it :) Love to you and Marie.....
Hi Ran,
I'm not happy about my throid levels, but cannot get doctors to take investigations further than
testing for TSH, which was 211.
Ran said:
Thank you for all of your input and replies. They were very helpful. I have thryroid disease and when my ataxia was starting he had read that the movement could be caused by the thyroid so he decreased my dosage. That is where it started. I went in for blood work today. I hope that is what the problem is.
BlessingsRandy
Ditto to all those supplements Rose and, as usual, a very well worded explanation.. always good to read. I do sometimes have to economise on all my supplements but they gradually get re introduced!
Beryl I totally understand about letting rip to your husband - this happens to me occasionally.
It helped a lot when he first came to our support group and heard others account of how it feels to have ataxia.
I was told I probably had it from birth but the symptoms have not been very noticeable until the aging process 'interfered.
hence it has been a very gradual process and I continue to cope'.with most things.. it just takes a lot longer.
I understand my husbands theory that I need to keep going but there are times when I obviously need help.
Well, it is obvious to others but ....
He says 'you only have to ask'... right... sometimes the words wont come. I am very lucky that I dont have slurred speech but have always struggled to project my voice and his hearing is not that good. To ask once is bad enough but to have to repeat it can be distressing.
Patsy x
Patsy, I concur with your comments!
I don't project my voice, I never have. Also, what I think and want to say, doesn't always come
out the way I want it to. People seem to misinterpret what I mean, sometimes I think I cause
offence, which is worse. That, along with slurring when I get stressed, often makes me
reluctant to start a conversation.
Patsy said:
Ditto to all those supplements Rose and, as usual, a very well worded explanation.. always good to read. I do sometimes have to economise on all my supplements but they gradually get re introduced!
Beryl I totally understand about letting rip to your husband - this happens to me occasionally.
It helped a lot when he first came to our support group and heard others account of how it feels to have ataxia.
I was told I probably had it from birth but the symptoms have not been very noticeable until the aging process 'interfered.
hence it has been a very gradual process and I continue to cope'.with most things.. it just takes a lot longer.
I understand my husbands theory that I need to keep going but there are times when I obviously need help.
Well, it is obvious to others but ....
He says 'you only have to ask'... right... sometimes the words wont come. I am very lucky that I dont have slurred speech but have always struggled to project my voice and his hearing is not that good. To ask once is bad enough but to have to repeat it can be distressing.
Patsy x
LOL Beryl.. I keep telling myself, I must get off here and then I see another message from you and cant resist answering ..
so much more enjoyable chatting on here than 'speaking'
I have same problem about feeling I might be misunderstood almost to the point of paranoia :0
I cant sleep sometimes because my mind wont stop analyzing a conversation - especially with family members following celebrations. Really affects my confidence.
Thank heavens for this group.
Patsy x
Beryl, good to hear the spaghetti sauce was good. Even if you cannot replicate it, I am sure you will come up with another one just as good. now what’s for dessert. Being on a rocky boat, I suggest something with ginger which helps settle the nausea.
Boat 2011, I hope you feel better after your rough day. Yes, it is good to let it out. I have a friend who gave me a little rag doll. It is called the D… Doll ( not sure I can say the D … word online. ) It is a very clever and yet so simple concept : when you feel frustrated,you grab it by the legs and whack it anywhere you want, like a table, a wall, a chair, preferably not your kids 
while screaming D…D…D…
It is very therapeutic and you end up laughing every time. It is of quite sturdy construction, but stop yourself before you whack the stuffing out of it:-)
This is a great place to vent. People understand.
I am lucky to have a wonderful husband and children who, from day one have supported me and are always ready to help.
Patsy is right, introducing your family to a support group will make them understand what you are going through. If there is none in your area, make them read some of the posts on this website.
I wish you the very best. Hang in there ! And do not forget to laugh as much as you can, but watch out for tears running down your legs… Ataxia comes in many forms… and we cannot run fast enough to the bathroom.
Now, Beryl, go back to your pots and pans. We are hungry here.
Back again Ladies! (what is it about this site that makes it so compulsive)
I've just come from a hospital appointment,nothing exciting just a review of my current contact lenses.
I had my usual type of frustrating exchange with the optician, she knew what she wanted to know, I gave
my side of the story, but our mutual interpretation was another matter! My husband added his two-pennoth
and eventually we got somewhere. I'm certainly getting my money's worth on the NHS, more photos to
confirm eye colour, and another type of contact lens to block double vision.
The Occlusal Lens I have at the moment blocks all vision in the affected eye. Great when you're sitting
down, and don't need to turn your head. But, when I'm outside amongst people, I feel very vulnerable.
It's not second nature for me anymore to turn my head, because of balance problems. Not having
20/20 vision means you have to, for obvious reasons. I found I was constantly being knocked by
people, I couldn't anticipate and move out of the way, I was almost scared to move in a crowded
shop. If you've read this far, you deserve a medal!!
Currently, we don't have an active support group in my area, one used to run in a pub, but was
disbanded.
I analyze things to the point of madness, overthinking is one of my biggest failings.
I had a good laugh with my husband in a crowded waiting area at the hospital. Couldn't possibly
repeat the conversation, the laugh was due to a mis-understanding. Then of course, a quick trip
to the loo!
I have some mushrooms on the table, crying out to be made into soup.
I went to a womens' health group last year, and the counsellor told us to imagine
having a parrot on your shoulder constantly repeating negative things. Then,
imagine grabbing it and treating it like the ragdoll every time it spoke. My
parrot was soon no more! It did work though!
You are both great Cicina and Beryl. Cicina’s fantastic humour …and Beryl’s spirit and…good food!
You are of great support.
I am feeling better today the horrible “episode” has passed and I feel ready to move on again. I am only afraid for the next one. But today I will do my best as I did yesterday. It is saturday and I have to make my son feel everything is fine today.
I will try both therapies, the real ragdoll D…D… Doll ahhhh!! And the parrott…hope i won’t pull its neck though if it annoys me too much…When I feel sick the parrrot becomes my boss…
Yesterday I went to work, i felt strong enough and dizziness has slowly gone… I just did. It was hard but I managed.I always think that people think I am crazy because episodic ataxia is not constant. At times I feel as if I will never be able to stand up agian…and then I do…I am lucky for that, but it is still very confusing. I
The fact that “the boat stops in a safe port” for a while keeps me going. The medicine I take is fundamental. However i am getting accustomed to always higher doses.
This group has made me understand thata there are people in a similar or often worse situations who still laugh and have the strength to help those like me, that have just got on the boat.
Thank you!! Great people here!
The same Beryl…the same…
Hi Ran,
I used to have lots of trouble with sleepiness during the day. The Ataxia doc that I saw at U.C. Davis ordered a sleep study, and I do have mild sleep apnea, which she said is common in some kinds of ataxia. It has helped me to get on a good dosage of sleep medication (my doc prescribed Trazadone) and I take Tylenol a couple of times a day and at bedtime. With that regimen I get a good 8-9 hours of good sleep per night, and rarely need to nap anymore. (The Tylenol helps with the aches/pains of fibromyalgia, which is also common with the type of ataxia that I have (FXTAS). I do have a cup of coffee in the morning and sometimes in the early afternoon, but I have to watch it because it messes up my sleep if I drink too much.
Good luck!
Lorinn
HI Boat2011, Give yourself a HUGE pat on the back! I admire your strength and determination! I repeat this to myself when I need a lift, "I may have ataxia, but ataxia doesn't have me"!..., ;o)
Ataxia had me unfortunately I am back to sleep, without any force to react. But wasn’t ataxia about dizziness…what is this sleep? Why? Does anybody knows what is happening?
Hi Boat 2011, Hmmm, I really don't know what to tell you about your extreme sleeping. I do get fatigued, but don't constantly have to sleep. I also don't suffer from dizziness as a rule. Are you depressed, as depression can cause one to sleep excessively? I think you should talk with your doctor or neurologist. Maybe some blood work is in order to make sure all is well. So sorry you're feeling this way! ;o)
Thank you rose. I woke up. Sleep comes when I move…I mean when I come back from work, or I have gone shopping or I have been doing some other type of not particularly stressful physical or stressful (as it has become) mental work. Then I am exhausted and I need to rest…I lay down and there I go I fall asleep!
This is what happens…it’s fatigue. I am trying to fix an appointment with a neurologist here. Back home my neurologist said it could be part of the symptoms. Let’s see what the doctor says here…I have started taking B supplements. On the other hand the Diamox tablets I take for Episodic Ataxia can make you tired…I have difficulty doing any type of physical activity. It just tires me. Walking is fine, because I still can most of the time without feeling dizzy. As I said if I did’t have my Diamox tablets I’ d be unable to do so. I walked with a stick before taking them…I have to get used to all this…
Hi Boat2011!
Does it make a difference to how you feel, after sleep? Are you more relaxed?
I'm lucky in that I don't work, and other than being at the beck and call of my cat,
I can sleep if I feel I need to. Sometimes, I'm sound asleep for hours, waking
usually when I need the bathroom! Of course, this can have a detrimental
effect on your sleep pattern during the night, so it's not something to do on
a regular basis. But, in my case, often it's when I've reached a peak in
concentration and just need to let everything wind down, then start again.
It's disorientating when you feel ok and reasonably 'normal' for a while,
then suddenly this 'thing' kicks in and literally knocks you off your feet.
When sitting down and relaxed, I have no feeling of anything wrong,
it makes me a bit blase, so much so that when I get to my feet I
expect to function in a normal fashion! What is that all about!
You would think my brain would be conditioned after all this time.
I hope you've felt well enough to enjoy the weekend with your son.
Berylx
I hear you Beryl, as I also feel "normal" when sitting, and, like you, I've questioned that! When I stand up I KNOW I have ataxia! Yes, Boat2011, I can relate to being fatigued after a physical or mental activity, although I usually don't need to sleep. As I've mentioned before my theory for fatigue is it takes so much energy with ataxia to do anything, as well as having to concentrate on every move 24/7 (for me)...,it's exhausting! It totally depletes my stamina (what little there is)...,ha! Trying to coordinate muscles to walk and not fall (even when using my cane), or make my hands/arms do what I want, when all seems to have a mind of their own. Just thinking about all this right now makes me tired...,ha! Thanks for listening to my "rant", as I'm finished now...,;o)
Rose, rant away as much as you like! I like to think giving vent on here is helping my husband!
It's the least I can do!
xB
rose said:
I hear you Beryl, as I also feel "normal" when sitting, and, like you, I've questioned that! When I stand up I KNOW I have ataxia! Yes, Boat2011, I can relate to being fatigued after a physical or mental activity, although I usually don't need to sleep. As I've mentioned before my theory for fatigue is it takes so much energy with ataxia to do anything, as well as having to concentrate on every move 24/7 (for me)...,it's exhausting! It totally depletes my stamina (what little there is)...,ha! Trying to coordinate muscles to walk and not fall (even when using my cane), or make my hands/arms do what I want, when all seems to have a mind of their own. Just thinking about all this right now makes me tired...,ha! Thanks for listening to my "rant", as I'm finished now...,;o)
We went to a social event last night - a very rare thing for us - quite nice actually as it was a masquerade Celebration so we all wore a mask. I miss not being able to dance especially when the music is loud as dancing seems to absorb the sound and beat!!
I only had two pimms and a glass of wine but the food from the buffet was not easily digestable. My husband, Ken, said I brought you some of everything so you select what you want - I ATE THE LOT !! I felt quite queasy and people going outside to smoke kept leaving the door open so I was cold too. however, we were in conversation with two other couples and it was nice to see Ken enjoying himself so we stayed until midnight. I got to sleep about 1am and was up about 8am.
I didnt feel too bad and, when my daughter in law, Kirsty, invited us to join them for a walk through the bluebell woods, I was quite excited as that meant seeing the grandchildren - 9, 7 and 6 years old - plus two little dogs.
That took about an hour and not surprisingly I couldn't keep my eyes open afterwards - I couldnt drop off to sleep either so I played hypnotherapy session and drifted for 30 minutes - I feel much more awake now but really uncoordinated when I try to stand and move about. Fortunately, I have no more commitments today and Ken is taking care of drinks food.
Nothing unusual there except to say how good it is to tell you all about it and know that you will understand why I need to think about how I feel and why. I havent got a headache - no actual pains but a general feeling of discomfort and illness that I cant describe - I guess my body is in recovery.
Patsy