HELP! Need advice!

General
1

Hello friends,

I have Spinocerebellar Ataxia 35. Slight symptoms started 14 years ago, I'm currently seeing Dr. Susan Pearlman once every three months, she has me give her all or any symptoms that are new, asks to see my new med list, checks a few actions affected by my ataxia and we are done. She is very interested in my new symptoms since they probed my dna further than usual and found I was the only one in America with SCA 35. She's never once said anything about the list of drugs.

My meds come from my PA (Physcian's Asistant), which is my family "doctor".

Currently, she has me on Keppra, Trazadon, Lyrica, Clonzapam, and a Fenatil (Druagisic) patch of 75

to be changed every 78 hours, and percacet to take for any break through pain.

I was recently switched from one seizure med, started with an L, I can't remember and I'm in bed for the night, but she switched me to the Keppra, slowly off one at the same time replacing with the other. I spent 4 weeks in bed, lost 30 pounds could not eat was crying because I felt as though I was dying. I couldn't be with my family, it was the worst thing that ever happened to my body. Any emails and phone calls to my family doctor were answered with, "remember I said you,ll feel yucky while making this change, drink two bottles of Boost drink and take two prenatal vitamins every day and that will keep me alive until this is over."

I saw her today for follow up and NOW she explains the downfall of Kepp

ra, NOW after I'm probably addicted again. I told her today that I was having some of the side effects she explained today, after I've been on Keppra for two weeks, and she took the 4 pills down to 3. I've decided after seeing her today, I want off all seizure meds! I don't have seizures, but am on these pills for the side effects.

IS ANYONE HERE ON SIEZURE MEDS for Ataxia? It just doesn't feel right after becoming so deathly sick for four weeks during a seizure med switch.

I'm calling her on Monday to tell her I want off Keppra and any seizure pills she wants me on, unless I here from my fellow Ataxians, that it's a normal drug to be on and many of you are on it!

I've not had any pain since the introduction of the patch, about a year ago, so I don't know what is going on here.

HELP!

Robin Yule

ps Excuse my spelling, I'm in bed and ready to sleep and don't want to crawl out of my covers to dig through my pills to find correct spelling, and I'm not the best typist anymore.

2

Good grief! I hate doctor’s’ that just keep throwing one drug after another because that’s all they know. There are no drugs for ataxia, except maybe ones to relieve muscle spasms, or pain. Stop everything and get a new doctor!

3

Dear Robin, hope you are feeling much better. My daughter takes CoenzymeQ10. It helps her. Shes 22 ang struggles with walking, swallowing and talking. However she is trying her best to keep calm. I know its not easy, but dont lose your faith! Ask your doctor about Q10. i’m here for you whenever you feel like talking! God bless you. Will keep praying for your wellness. Love, Maggie

4

Hi Robin, I agree with Kite, you seem to be on some heavy duty meds. There is no cure for Ataxia and unless you have some underlying condition, you should find out why they have you on these. Also, why doesn’t Dr. Perlman prescribe for you? Why a physician asst? Ataxia is a rare disease so I would count on a neurologist only.
Good Luck

5

Goodness, what a story! I am so sorry you have had such a hard time. I don't know anything about your SCA type, but I would be surprised to hear ataxia had any pain associated it. I had seen two neurologists (one a chief at a Boston Hospital) to confirm my diagnosis of SCA . Both indicate there is no med for ataxia.

However, I do have peripheral neuropathy and accompanying muscle spasms which are painful, and for that, my neurologist has prescribed Mirapex, which is also prescribed for folks with Parkinson's. I am not convinced that it does anything though.

I say follow your instincts. Get off the drugs and find another neurologist.

6

I am not qualified to give you any medical advice, but there is one thing I know for certain : do not stop your seizure medicine all at once. Consult first with your doctor (not your P/A, I agree with Suzi there). There is a way to taper certain medications.
Also ask your pharmacist if all the medicines you are on are not interfering with each other…it seems like an awful lot of chemical mixing…
My best wishes to you! Take care.

PS, my neurologist also told me there is no medicines for ataxia per se. Sometime es they prescribe medicines used for Parkinson’s or Ms, but he added " they do not help much and are not worth the side effects…"

7

I am so sorry you’ve gone through all this! I am definitely no doctor, but please DO NOT stop all the meds, as you have taper off some!!! I suggest dropping Dr. Perlman and getting you a good neurologist that specializes in movement disorders. Other posters have echoed this, that seems like way too many meds. I take 1 med for the spasms, fish oil, and a protein powder with Creatine in it. My neuro said there is no curing ataxia but Creatine can help muscle deterioration. (I’m young, with no kidney probs, do not use Creatine if have kidney probs.)
Bottom line you should not be a guinea pig for a doc who knows nothing. You need a new doc!

8

I will tell you my late Father’s story. My Father developed a heart condition in his 60’s. He had a triple by pass and in the years following 2 stents. When you have a heart condition you are routinely put on blood thinners, a cholesterol med and a low cholesterol diet. You need Cholesterol for your brain. My Father also received flu shots for many years. Flu shots contain 25-75 mcg. of mercury. Mercury is a neurotoxin. My Father soon began struggling with his balance. Imagine that! He went from a cane, to a walker, to a wheelchair. He was also put on anxiety medication called propanol which destroyed his mitochondria

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Con’t

. My father could no longer stand up on his own. He passed away a year ago January. I was able to get him off most of the meds but it was difficult to find treatment when you could no longer hold your own weight. I would encourage all of you to seek intracellular nutrition and look into pulsed electromagnetic therapy. Also read Dr. Jerry Tennant’s book " Healing Is Voltage"
Good luck in your wellness journey! We are fearfully and wonderfully made!!! The Healing Docs in my company say we all should live to 120-130 years old!

10

I forgot to mention my Father was diagnosed with cerebellum ataxia. One more word of advise. Ignore the diagnosis. A chronic health condition is all about oxidative stress, dehydration, acidosis, and inflammation.

11

Dear Robin,

Had to reply to your post. My husband has been on anti-seizure meds for 40 years following a traumatic brain injury from an attempted robbery--the TBI caused seizures. Now we have learned that a "side effect" of anti-seizure meds is ATAXIA-yep--look it up. Vimpat almost killed him. We had to SLOWLY wean him off tegretol and wean him onto Keppra. In the past 3 years our goal has been to get him off all seizure meds. We have done many, many things that have helped him--diet, supplements, shoes, CPAP, Neurolink, etc. Not too good at typing a lot, but would be happy to speak or connect with you cause those meds really hit me as the cause of my husband's problems, at least a large part of the problem of ataxia.

12

Robin, I too have seen Dr Perlman several times but not regularly as I live in Oregon. i think she is the best but you are not being medicated by her but by a PA. she likely would not interfere with that unless you complained. please don’t stop taking meds without a plan and medical support. It can be a huge problem, but the idea of dropping some or all of these might be your best course. Why in heavens name do they think you need all this? Were you in pain? Ataxia usually doesn’t have pain unless you have peripheral neuropathy and Lyrica is sometimes prescribed for that. When I first went to Dr Perlman they were trying an anti-seizure medication as an experiment to see if it would help balance/vertigo. it didn’t and I tried it 2 different times for about 5-days each. made me groggy. Your Trazadon is an anti-depressant. I took that before I had ataxia for sleep for about 30-days. Why are you taking it? If you are depressed, treatment for depression should include psychotherapy. Have you had a sleep study? Sleep apnea will cause depression and is common in ataxia. And an easy one to fix without drugs. Isn’t Clonzapam a mood stabilizer or anxiety medicine? I don’t know but you should read up on all of these. Most of us take no medications other than vitamins. I consider myself lucky in this regard. The doctors know very little about Ataxia and we are all their Guinea pigs to experiment on if we let them. Remember -they are guessing. Your reading up on meds on the internet and talking to your pharmacist is helpful especially if they have no one else to experiment on. ask your PA how many other SCA 35 patients of hers she has prescribed the same drug cocktail to who have seen positive results? The answer is 0. Look around for other specialists to help you with the various symptoms you have. Get a team of doctors working for you. Some will be good, and some not so good. Include a naturopath. UCLA probably has one there. eat healthy and exercise, and have some fun every day!

13

Hi Robin:-)
In 1991 I had a seizure in my sleep, it happened after my car slid out of control on ice.
I was told I had Temporal Lobe Epilepsy.

For the next 15 or so years I was obliged to take various anti epilepsy meds because
I wanted to keep my driving licence.

I never had another seizure, although I did have déjà vu episodes after getting out of
bed in the morning, this was the reason (I was told) I needed to take medication.

Tegretol, Sodium Valprote and Carbamazaphine Retard all failed to stop déjà vu.

When other symptoms finally led to a diagnosis of Ataxia in 2011, the Neurologist
said he didn’t think I had Epilepsy, it was Ataxia that had caused the seizure and
Déjà vu and advised I stopped the Epilepsy meds.

But, I still don’t know what type of Ataxia I have. xB

14

Hi Robin,

I am on Keppra and klonopin as well. they work well for me so far. I have SCA14 so I have myoclonus as well as SCA. I must say that in my case I seem to handle the side effects well. My Neuro slowly brought me up in dosage on Keppra. He took his time once I was more use to it and wasn't having the dizzy spells and feeling really strange, it helped greatly with the myoclonus. the klonopin helps me to sleep at night. I'm now on 3000mg of keppra and 2mg of klonopin. I'm on a lot of other meds as well but these are to help me specifically with SCA14. I have a scooter and walk very short distances with a walker for now. Because of my rapid progression, my doctor told me that we are going to consentrate on just trying to make me confortable. I am on permenant disablity and have that sight chance of turning into MSA.