Medications or Therapy for Vertigo caused by SCA

Hiya, I’ve got SCA-don’t know! (same as your mum) and I also have BPPV which is, at times, a complete nightmare!! My neurologist prescribed amitryptline, which works! He also gave me a list of exercises to try.
Hope your mum finds something that helps xx

Thank you so much, Rochelle. I will take to her neurologist about this drug. I appreciate your time.

Hi Cece,

why does your mom not ask her neurologist if and why she could have SCA6? He/she also could phone to the next laboratory and ask of the price of a simple SCA6 testing (with all its limitations).l

I don t understand why you are asking in this patient forum for other patients helping with treatment. 1. only doctors are allowed to treat peopls for diseases. F 2. your mother would need a diagnosis first from the doctor, then she will know if her ears are the cause of her problems and/or the ataxia. Nobody even with experience in ear problems would give you such "tele-advices" for your mother!

Hopefully not having written incorrectly.

Kind regards,

Akita

Hi CeCe,

When I mentioned Cinnarizine yesterday, it was safe in the knowlede that an ataxia specialist uses it to treat vertigo as an alternative to betahistine.

Please refer to my last paragraph of yesterday.

All the Best, Dory.



Akita said:

Hi Cece,

why does your mom not ask her neurologist if and why she could have SCA6? He/she also could phone to the next laboratory and ask of the price of a simple SCA6 testing (with all its limitations).l

I don t understand why you are asking in this patient forum for other patients helping with treatment. 1. only doctors are allowed to treat peopls for diseases. F 2. your mother would need a diagnosis first from the doctor, then she will know if her ears are the cause of her problems and/or the ataxia. Nobody even with experience in ear problems would give you such "tele-advices" for your mother!

Hopefully not having written incorrectly.

Kind regards,

Akita

hi,

i have hereditary SCA2. I have been dizzy, vertigo?? since 2007. i would find out what kind of ataxia you have, if you want to do your own research (along wiith a doc) google "gene reviews" it will tell you about most diseases. i am starting a new drug which i'm hoping for the best. it's "4-amino pyrodine" which they use on MS patients also called "ampyra" (very expensive). i'll let you know how it goes. have your mother try not to make fast movements with her head or move her head too much. also low dose valium supresses that area in the brain. please get back to me. i know what she''s going thru.

lorraine

Akita,

You are actually writing incorrectly. The whole point of an open forum is to ask questions.

Your tone is very negative and I don't like it. I am going to respond to your post and at that point I would prefer that you not make any more nasty comments. Your condescending tone is not appreciated. I have received great info on this site. Unfortunately, most of what you have had to say has not been kind and I find it very disrespectful.

1. My mom has been diagnosed with SCA. This has been determined through MRI's that she has had done and other physical tests she has been given. She has not been given a specific diagnosis (i.e. sca 2, sca 6, etc.) because that would require genetic testing that insurance in the United States does not cover. Again, her symptoms match closely to SCA 6 but it may not be SCA 6. I am researching options with the lab that performs these tests but at this particular time we cannot afford to pay out of pocket for the tests. For you to assume that we would not have already looked into this is ignorant. It is also presumptuous on your part.

2. I am not asking patients for a diagnosis for my mom. I am aware that doctor's are the only ones who treat patients. I am not stupid.

3. My mom has been diagnosed with SCA and vertigo by her neurologist and her primary care doctor.

You have either not clearly understood my question or are just an unhappy person with a lot of time on their hands to belittle my posts.

I asked the initial question only to see what other people's experiences were so that I could mention these things to my mom's doctors as potential ways to help her. I am not getting "tele-advice" I am simply on a forum looking for potential ideas and options. I have received great info on this site and will use it along with my mom's doctor to come up with a plan. I am very grateful for the information I have received so far. The idea of Ginger Chews, Vertigo Exercises, names of medications has been very helpful. My mom does perform exercises at home but the post I received added a new exercise that I am sure my mom can try.

I would ask you to leave the discussion if you feel you can continue to question me and my reasons for being on this forum or site.

CeCe

Hi Dory,

Yes. I understood your post.

I completely understood you were giving me your personal experience and that my mom's neurologist would be the one to diagnosis and prescribe any medication. My initial question was just to see if there were options out there that we may not have heard of. I wrote down this particular medication to share with my mom's doctor. You never know, it may help. Thank you for your info!

Dory said:

Hi CeCe,

When I mentioned Cinnarizine yesterday, it was safe in the knowlede that an ataxia specialist uses it to treat vertigo as an alternative to betahistine.

Please refer to my last paragraph of yesterday.

All the Best, Dory.

Hi Lorraine,

Thanks so much for your insight. I wish you all the best with the new medication and look forward to seeing how it goes. My mom makes very deliberate movements and tries very hard not to make any motion that may bring on a vertigo spell.

I am trying to find a way for her to get genetic testing done. It is very expensive in the U.S. I will continue to google, etc.

Thanks again for your info. The more info the better!

Lorraine Lerner said:

hi,

i have hereditary SCA2. I have been dizzy, vertigo?? since 2007. i would find out what kind of ataxia you have, if you want to do your own research (along wiith a doc) google "gene reviews" it will tell you about most diseases. i am starting a new drug which i'm hoping for the best. it's "4-amino pyrodine" which they use on MS patients also called "ampyra" (very expensive). i'll let you know how it goes. have your mother try not to make fast movements with her head or move her head too much. also low dose valium supresses that area in the brain. please get back to me. i know what she''s going thru.

lorraine

I, have Cerebellar Ataxia and I only take anti depressants.They might help but it needs to be prescribed by a doctor.

They dont work for everyone but this is a horrible disease and we need all the help we can get.Your mother is lucky to have such a caring daughter.I believe there is something that can help with nauseea. Good luck.Feeling sick is horrible.

I think SCA6 is very slow.We have one sufferer in our group.

Thanks, Marie. I look forward to learning more on this site. Take care.

Marie Turner said:

I, have Cerebellar Ataxia and I only take anti depressants.They might help but it needs to be prescribed by a doctor.

They dont work for everyone but this is a horrible disease and we need all the help we can get.Your mother is lucky to have such a caring daughter.I believe there is something that can help with nauseea. Good luck.Feeling sick is horrible.

I think SCA6 is very slow.We have one sufferer in our group.

Hi,

I will google gene reviews. Thanks so much!

CeCe said:

Hi Lorraine,

Thanks so much for your insight. I wish you all the best with the new medication and look forward to seeing how it goes. My mom makes very deliberate movements and tries very hard not to make any motion that may bring on a vertigo spell.

I am trying to find a way for her to get genetic testing done. It is very expensive in the U.S. I will continue to google, etc.

Thanks again for your info. The more info the better!

Lorraine Lerner said:

hi,

i have hereditary SCA2. I have been dizzy, vertigo?? since 2007. i would find out what kind of ataxia you have, if you want to do your own research (along wiith a doc) google "gene reviews" it will tell you about most diseases. i am starting a new drug which i'm hoping for the best. it's "4-amino pyrodine" which they use on MS patients also called "ampyra" (very expensive). i'll let you know how it goes. have your mother try not to make fast movements with her head or move her head too much. also low dose valium supresses that area in the brain. please get back to me. i know what she''s going thru.

lorraine

SCA 6 is closely related to Episodic Ataxia type 2 which I have … I am on acetazolomide (diamox) which is fantastic and takes the dizziness and many other symptoms away not sure it would work for SCA 6 … By the way welcome to the group it is a fantastic mine of information as are some groups on Facebook relating to specific ataxias :slight_smile:

Hi CeCe,

sorry having given cause for you to complain about my postings. The last communication between us i remember was yesterday, when you wanted that i would provide you with the contact data of the testing in Austria. I tried to send you a private message which was not possible because i should have been your friend in this forum first. Then i have posted my email adress on your status/profile. I noticed that you did not use it, but in my opinion wanted to get the contact data publicly. Maybe a communication error has occurred by you not having seen my posting. You could have posted in the general discussion forum and this posting appeared on your status side so that i considered this to be a reaction to my offering of my private email. When i noticed your request i posted the link to the webside of the testing institute into your profile. After that i read the englishspeaking informations on this webside and had to notice that they were wrong and would have put Bens friends (and me, but first of all Bens friends) - and of course the medician in danger to get a legal claim from concurrencing laboratories in the US. So i had to delete the link. Same night i had the opportunity to correspond with this very medician and he communicated me that he would have deleted the wrong passage. As i am not familiar with the exact rules for sending blood samples etc over the ocean and importing them to Austria, i personally do not want to put the link publicly on this forum side. Please understand me. You are free to phone to one of the testing institutes under the link i have posted and you are invited to send me a friends request for a private communication.

i personally had got reserves to the medicament Cinnarizine first because i have read under Wikipedia that 11 % of the patients taking this for longer periods get parkinsons. There is a study from 2002 reporting safety for vertigo under the footnotes of the Wikipedia article, but this study was only done with a selected group of patients, not central vestibular symptoms - ataxia not mentioned, and persons with a lot of different conditions excluded from the study. There was also a later study from 2009 about vertigo in connection with SCA6, where it is written, that from the characteristica of this vertigo of SCA6 patients this sort of vertigo is different from the usual one - i.e. more central; and another, where it was reported that SCA6 patients frequently reported vertigo symptoms before the onset of the outbreak of the disease. But these are in relation to all SCApatients relatively few, so that this perhaps has been the reason that i could not read special recommentations for medication for this condition in the management and treatment chapter of the Handbook of Clinical Neurology 103. So i was suspicious. This med - so i learned from this discussion - might be one of the best ones for the vertigo condition in combination with SCA6 alleviating much suffering... Also the vertigo reported by you which your mother has got seemingly, was more severe than in most of the study patients, so that this condition could constitute a special diagnosis. i could not find on pubmed database any report about this special treatment for vertigo combined with sca, perhaps because there are not many patients treated in this way. My uncle with SCA6 got offered a similar medicament under the requirement that he first would have to undergo a special examination of the spinal fluid for to approve that he would not have the personal condition to get parkinsons of if.He renounced this 12 years ago and till today he has got no medication except physiotherapies and vitamins.

Now i will withdraw from this discussion up from now, did not want to hurt you...Kind regards, Akita



CeCe said:

Akita,

You are actually writing incorrectly. The whole point of an open forum is to ask questions.

Your tone is very negative and I don't like it. I am going to respond to your post and at that point I would prefer that you not make any more nasty comments. Your condescending tone is not appreciated. I have received great info on this site. Unfortunately, most of what you have had to say has not been kind and I find it very disrespectful.

1. My mom has been diagnosed with SCA. This has been determined through MRI's that she has had done and other physical tests she has been given. She has not been given a specific diagnosis (i.e. sca 2, sca 6, etc.) because that would require genetic testing that insurance in the United States does not cover. Again, her symptoms match closely to SCA 6 but it may not be SCA 6. I am researching options with the lab that performs these tests but at this particular time we cannot afford to pay out of pocket for the tests. For you to assume that we would not have already looked into this is ignorant. It is also presumptuous on your part.

2. I am not asking patients for a diagnosis for my mom. I am aware that doctor's are the only ones who treat patients. I am not stupid.

3. My mom has been diagnosed with SCA and vertigo by her neurologist and her primary care doctor.

You have either not clearly understood my question or are just an unhappy person with a lot of time on their hands to belittle my posts.

I asked the initial question only to see what other people's experiences were so that I could mention these things to my mom's doctors as potential ways to help her. I am not getting "tele-advice" I am simply on a forum looking for potential ideas and options. I have received great info on this site and will use it along with my mom's doctor to come up with a plan. I am very grateful for the information I have received so far. The idea of Ginger Chews, Vertigo Exercises, names of medications has been very helpful. My mom does perform exercises at home but the post I received added a new exercise that I am sure my mom can try.

I would ask you to leave the discussion if you feel you can continue to question me and my reasons for being on this forum or site.

CeCe

When reading this, good turned into WTH?

My initial reaction was “Wow!” - we all know that stress isn’t beneficial to the body, especially not good for ataxia - and I wasn’t expecting such conflict that somehow transferred into stress for me, anyway, on this site. If no one is aware of this correlation of stress and functioning on the body, I’m sure that it is mentioned a few times on here that can be found using the Search box above.

My second reaction was “Wow!” - I think that it’s safe to assume that all of us can be responsible for what we say, and that some things were meant to be spared from many others who don’t care to share in any additional dramas. That’s one reason we have psycho-therapists.

My third reaction was, “Wow!” - I see a theme here. I think that it’s great for all who gave some information that worked for him or her…I think that’s a main reason for this site…not necessarily giving treatment advice, but offering what worked for someone. Sometimes we forget that we’re on the same team.
http://www.mindbodygreen.com/0-7552/thei-best-pep-talk-youll-get-all-day-video.html