Medications or Therapy for Vertigo caused by SCA

Hi,

I am a new member to this group. Thank you for having me. My mom suffers with SCA. We still don't know what type of SCA she has. Her symptoms match closely to SCA 6 but she has never received a specific diagnosis. I am hoping that she can get genetic testing soon. My question. Have any of you tried medications or therapies that help the dizziness (symptoms of vertigo) associated with SCA's. She has been feeling so terrible. I am wondering if a medication might help her symptoms? Natural supplements? What about seeing an ENT? Could they help? I feel terrible for her. She has been trying to do the at home vertigo exercises. If she tries them she immediately becomes ill (vomitting, etc.) Thank you in advance for any info.

I'm not sure whether this would help your mom but I use Prochlorperazine for vertigo and nausea. It makes life much more bearable. I was given Betahistine at one stage but didn't find that made any difference at all. If the nausea is really bad I add Cyclizine too. Your mom's GP should be able to prescribe something to at least make her life more comfortable.

Good luck

Helen

I have SCA6 and a symptom is positional vertigo i.e. when I lay down or stand up to quickly, look up etc., and have been prescribed acetazolamide for this. It did help at first, but I have found physiotherapy a much better solution. The cawson/cooksey exercises are really good. Unfortunately it has to get worse to get better.

Hope this helps, Linda

It is really a problem to know soo little about your mother.

At least she should try to get a diagnosis.

Why do you think she has got SCA6?

(I have read much about SCA6 because this is in our family. My first test was negative for it but this was not 100%.)

Even if your mother should have got SCA6, she could have her vertigo because of other reasons.

What does her neurologist say? Has s/he got any idea for medicamental treatment? Have there been other trials to treat her vertigo? General Practicioner? Have these trials been of some success? And

Please, tell me, -what is an ENT? This seems to be an abbreviation?

Kind regards,

Akita

Hi Poppy,

meds which are helping you could be dangerous for others, bought "over the counter".

This should always be considered.

Kind regards,

Akita

ENT is a ears, nose and throat doctor.

Akita said:

It is really a problem to know soo little about your mother.

At least she should try to get a diagnosis.

Why do you think she has got SCA6?

(I have read much about SCA6 because this is in our family. My first test was negative for it but this was not 100%.)

Even if your mother should have got SCA6, she could have her vertigo because of other reasons.

What does her neurologist say? Has s/he got any idea for medicamental treatment? Have there been other trials to treat her vertigo? General Practicioner? Have these trials been of some success? And

Please, tell me, -what is an ENT? This seems to be an abbreviation?

Kind regards,

Akita

Hi CeCe,

anyway i would consult an ENT. He or she can tell your mother

-- if the ears are guilty having caused the dizziness and/or to which extent. It is possible that the ENT finds causes in his competency/field, but a neurologist would find causes in his/her field.

-- if your mother has got specialities in her throat and in her nose. Maybe she has got swallowing problems also?

Maybe he/she would recommend your mother a testing for sleep apnea or an op.

--Maybe he has got some medications for your mother. For this purpose asking him that,your mother should prepare a list of all her actual medications. If possible bring also her medical records; neurology, recent blood report...

Kind regards,

Akita

Thanks, dear Lory and Folky!

My knowledge of foreign words for this profession ist restricted to "Oto-Rhino-Laryngologist".

Have a nice day,

Akita

The Gen-Testing for SCA6 costs Euro 106,00 in Austria if this would not be covered by your insurance. When you want to test more SCAs, this would be more expensive. I dont know, but perhaps i have read that there is already existing a relatively cheapter testing package which tests out for the most common SCAs. An alternative would be that you - when also your Neurogist does not find any testing where the exact "SCA" is indicated, that you try to find out,which sorts of SCAs your mother would have with the highest propability. Perhaps it would be possible, by reading some studies and other infos, to find out these SCAs. Perhaps this would not be very difficult.

I wonder why your mother has been diagnosed with SCA, when the correct diagnosis is not known. In my knowledge all SCAs have got numbers !?

Does anybody in this forum know if this would be possible? Or is there existing the denomination "SCA" as an old name for one of the SCAs, today named in another way?

Kind regards,

Akita

HI CeCe,

I have been a presympomatic SCA6 carrier but have been having big problems with vertigo. I'm waiting to be seen by my consultant at the Oxford Ataxia Centre to find out whether it's part of SCA6 or a coincidence. I have found Betahistine very helpful although it does not stop the vertigo completely & I'm quite nauseated in the mornings. I'm going to go back to my GP this week to suggest trying Cinnarizine (brand name 'Stugeron') instead as it may help with the nausea too.

I hope you are just doing a little anecdotal research before asking for professional help from a doctor.

Good Luck, Dory.

when I fly or even on a ... curvy car ride;) - Ginger chews

Hi Dory,

in my opinion as a reader of your post, i would hesitate to let me prescibe this Cinnarizine by your General Practicioner. If he/she really would do that, i would principally doubt on the prescription. It does not seem as you would have your vertigo from an ear problem. Or this would have been diagnosed. Principally my GP hesitates to prescibe such things - because this would be a decision of a neurologist. Anyway, i suppose that you also have checked ear problems by a oto-rhino, if any.

I have read, but cannot cite in this moment, in one of the SCA6 studies, that it would be possible that symptoms who are characteristically not on the beginning of SCA6 or even not belonging to the typical "picture" of SCA6 could occur, whether with SCA6 or before the outbreak of SCA6. Vertigo in SCA6 is said to be of a only temporarily expression, on the beginning of the disease. But i don t know, if your vertigo would be more than that or even caused by another underlaying disease. I think that clinical investigations would be necessary to discriminate, or perhaps a neurologist with much experience with patients with SCA6 could tell this to you. You will go to a specialized center and hopefully get help there.

In cases of real desperation you could try to consult another neurologist before you will have the date with your specialized center. His or her advice,also for medication, seems more professional to me than asking your GP (i don t know her/him). There are really super GP, but also others who are very tolant, where the secretary writes the prescriptions you want to get, if the med would not be commonly considerated as dangerous. Also pharmacies are selling some meds which should be described. On the other side i have experienced situations where nobody would have given be the right advice. - Big cramps and pains after a seemingly harmless magnesium substitution, openly avaible in the pharmacy,which i had tolerated very well some months ago.. Also with the best doctor you don t have the insurance that everything will work well with your medication.

Kind regards

Akita

Dory said:

HI CeCe,

I have been a presympomatic SCA6 carrier but have been having big problems with vertigo. I'm waiting to be seen by my consultant at the Oxford Ataxia Centre to find out whether it's part of SCA6 or a coincidence. I have found Betahistine very helpful although it does not stop the vertigo completely & I'm quite nauseated in the mornings. I'm going to go back to my GP this week to suggest trying Cinnarizine (brand name 'Stugeron') instead as it may help with the nausea too.

I hope you are just doing a little anecdotal research before asking for professional help from a doctor.

Good Luck, Dory.

Hi Dory,

when it is because of your job and so, and no better solution i would try on your place to start with some sitting meditation, despite this could seem not naturally for you. If you never have done this this could be difficult to start. I do some Zen Meditation. Perhaps this was the main cause,that my vertigo went almost away last weeks (but there could be also other reasons). In the morning standing up early. Sitting 25 min, walking on the carpet 10 min, then again sitting 25 min, then walking 10 min, then sitting 25 min.. After a week you should see if this works. Also a zen introduction by a practizing group or teacher would be helpful. If none of this cases would be good for you, i know a japanese practicioner -a facebook friend, - who has been sending often demo videos for zen meditation and surely gives advice.

Good luck!



Dory said:

HI CeCe,

I have been a presympomatic SCA6 carrier but have been having big problems with vertigo. I'm waiting to be seen by my consultant at the Oxford Ataxia Centre to find out whether it's part of SCA6 or a coincidence. I have found Betahistine very helpful although it does not stop the vertigo completely & I'm quite nauseated in the mornings. I'm going to go back to my GP this week to suggest trying Cinnarizine (brand name 'Stugeron') instead as it may help with the nausea too.

I hope you are just doing a little anecdotal research before asking for professional help from a doctor.

Good Luck, Dory.

Hi,

It is very frustrating not knowing what my mom has. I thought she might have SCA 6 based on her symptoms. This is just a guess. Her MRI shows degeneration of the cerebellum and pons.

I really hope that she can get genetic testing done. I don't know if Medicare will cover the costs. We live in the United States. the tests can cost up to $18,000 if not covered by insurance.

Is this a UK site? Are genetic tests readily available in the UK?

An ENT is an abbreviation for Ear, Nose, and Throat Specialist. I wondered if someone with extensive experience with the ear could help with the treatment of her vertigo?

Thanks for your questions.



Akita said:

It is really a problem to know soo little about your mother.

At least she should try to get a diagnosis.

Why do you think she has got SCA6?

(I have read much about SCA6 because this is in our family. My first test was negative for it but this was not 100%.)

Even if your mother should have got SCA6, she could have her vertigo because of other reasons.

What does her neurologist say? Has s/he got any idea for medicamental treatment? Have there been other trials to treat her vertigo? General Practicioner? Have these trials been of some success? And

Please, tell me, -what is an ENT? This seems to be an abbreviation?

Kind regards,

Akita

Hi Akita,

Did you mean 106 euros or 10,600 euros? Thanks so much. I wonder if she could be tested as far away as the U.S. I think I may be on the wrong site. I thought I was on a site in the U.S. Thanks so much!

Akita said:

The Gen-Testing for SCA6 costs Euro 106,00 in Austria if this would not be covered by your insurance. When you want to test more SCAs, this would be more expensive. I dont know, but perhaps i have read that there is already existing a relatively cheapter testing package which tests out for the most common SCAs. An alternative would be that you - when also your Neurogist does not find any testing where the exact "SCA" is indicated, that you try to find out,which sorts of SCAs your mother would have with the highest propability. Perhaps it would be possible, by reading some studies and other infos, to find out these SCAs. Perhaps this would not be very difficult.

I wonder why your mother has been diagnosed with SCA, when the correct diagnosis is not known. In my knowledge all SCAs have got numbers !?

Does anybody in this forum know if this would be possible? Or is there existing the denomination "SCA" as an old name for one of the SCAs, today named in another way?

Kind regards,

Akita

Thanks Linda.

linda elizabeth green said:

I have SCA6 and a symptom is positional vertigo i.e. when I lay down or stand up to quickly, look up etc., and have been prescribed acetazolamide for this. It did help at first, but I have found physiotherapy a much better solution. The cawson/cooksey exercises are really good. Unfortunately it has to get worse to get better.

Hope this helps, Linda

My testing in the states to see what Kind of ataxia I had.. Was 16 thousand dollars. I put a stop to it. I know I have it. and I will not pay that amount for a test. But that's just me.

CeCe said:

Hi Akita,

Did you mean 106 euros or 10,600 euros? Thanks so much. I wonder if she could be tested as far away as the U.S. I think I may be on the wrong site. I thought I was on a site in the U.S. Thanks so much!

Akita said:

The Gen-Testing for SCA6 costs Euro 106,00 in Austria if this would not be covered by your insurance. When you want to test more SCAs, this would be more expensive. I dont know, but perhaps i have read that there is already existing a relatively cheapter testing package which tests out for the most common SCAs. An alternative would be that you - when also your Neurogist does not find any testing where the exact "SCA" is indicated, that you try to find out,which sorts of SCAs your mother would have with the highest propability. Perhaps it would be possible, by reading some studies and other infos, to find out these SCAs. Perhaps this would not be very difficult.

I wonder why your mother has been diagnosed with SCA, when the correct diagnosis is not known. In my knowledge all SCAs have got numbers !?

Does anybody in this forum know if this would be possible? Or is there existing the denomination "SCA" as an old name for one of the SCAs, today named in another way?

Kind regards,

Akita

Hi Lori,

I know. I was told that my mom's tests could run as high as $18k. I think it's terrible, borderline criminal to charge this much. I don't understand why the cost is so high. I would think that a clear diagnosis would be beneficial to the patient, doctor, and science. I am really looking to just get information at this point to help my mom's symptoms. I was asking about treatments for vertigo. Do you experience Vertigo?

Lori said:

My testing in the states to see what Kind of ataxia I had.. Was 16 thousand dollars. I put a stop to it. I know I have it. and I will not pay that amount for a test. But that's just me.

CeCe said:

Hi Akita,

Did you mean 106 euros or 10,600 euros? Thanks so much. I wonder if she could be tested as far away as the U.S. I think I may be on the wrong site. I thought I was on a site in the U.S. Thanks so much!

Akita said:

The Gen-Testing for SCA6 costs Euro 106,00 in Austria if this would not be covered by your insurance. When you want to test more SCAs, this would be more expensive. I dont know, but perhaps i have read that there is already existing a relatively cheapter testing package which tests out for the most common SCAs. An alternative would be that you - when also your Neurogist does not find any testing where the exact "SCA" is indicated, that you try to find out,which sorts of SCAs your mother would have with the highest propability. Perhaps it would be possible, by reading some studies and other infos, to find out these SCAs. Perhaps this would not be very difficult.

I wonder why your mother has been diagnosed with SCA, when the correct diagnosis is not known. In my knowledge all SCAs have got numbers !?

Does anybody in this forum know if this would be possible? Or is there existing the denomination "SCA" as an old name for one of the SCAs, today named in another way?

Kind regards,

Akita

No Thank goodness I don't think I have vertigo. Yea when my doctor said. "The test might not even say what kind you have, because there are so many" Thats when I stopped it. Yes you would think they would just do it for science reasons. Ive been seeing her for awhile and she says mine is like SCA6. So I go with that. I know you want answers. Good luck with that. lol

CeCe said:

Hi Lori,

I know. I was told that my mom's tests could run as high as $18k. I think it's terrible, borderline criminal to charge this much. I don't understand why the cost is so high. I would think that a clear diagnosis would be beneficial to the patient, doctor, and science. I am really looking to just get information at this point to help my mom's symptoms. I was asking about treatments for vertigo. Do you experience Vertigo?

Lori said:

My testing in the states to see what Kind of ataxia I had.. Was 16 thousand dollars. I put a stop to it. I know I have it. and I will not pay that amount for a test. But that's just me.

CeCe said:

Hi Akita,

Did you mean 106 euros or 10,600 euros? Thanks so much. I wonder if she could be tested as far away as the U.S. I think I may be on the wrong site. I thought I was on a site in the U.S. Thanks so much!

Akita said:

The Gen-Testing for SCA6 costs Euro 106,00 in Austria if this would not be covered by your insurance. When you want to test more SCAs, this would be more expensive. I dont know, but perhaps i have read that there is already existing a relatively cheapter testing package which tests out for the most common SCAs. An alternative would be that you - when also your Neurogist does not find any testing where the exact "SCA" is indicated, that you try to find out,which sorts of SCAs your mother would have with the highest propability. Perhaps it would be possible, by reading some studies and other infos, to find out these SCAs. Perhaps this would not be very difficult.

I wonder why your mother has been diagnosed with SCA, when the correct diagnosis is not known. In my knowledge all SCAs have got numbers !?

Does anybody in this forum know if this would be possible? Or is there existing the denomination "SCA" as an old name for one of the SCAs, today named in another way?

Kind regards,

Akita

Hi Cece,

your mother seems to be not too old? Why does she not write in this forum? I think we would like you both, and then she would be able to tell us her problems first hand! You know i know some german forums with a lot of trolling relatives ...

Kind regards,

Akita