Hello Dusty and Marsha,

How are you? I hope that you are doing well!

I remember that you had said that you had gone to a neuro at Toronto General who was not knowledgeable about HD. I had my neuro appnt this week at North York with Dr. Esmail. He was a disaster. I had to ask him all the quetions he did not provide any information. I had asked him for Memantine and he did not even both to read the info sheet that I had brought. He said he would not be prescribing this for me. I told him how many people it is helping and he still did not prescribe it. I told him I was not depressed and I had insomnia and I was tired all the time. I know that these are 2 common HD symptoms. He chalked it up that I was depressed and prescribed an anti-depressant. I told him that I am not depressed at all these were common HD symptoms. He really was not listening. This whole visit was surreal as anything I had asked for prescription-wise (memantine and a sleeping pill) he did not give me. He precribed AMATADINE for movements and MIRTAZAPINE for depression. I checked these 2 prescriptions online and it says AMATADINE is for Parkinsons and the MIRTAZAPINE is for Major Depression! Yikes, Does he even know what he is doing?

I am curious to know if this was the same neuro you had gone to? I will be going to a different one to get the proper medications they have a neuro who knows about HD in Kitchener and there is also one in London.

I really don't trust him and won't be taking any of those meds.

What do you think? Or maybe Marsha has any ideas?

First off, just because you ask for memantine doesn't mean you will get it. Some doctors will try it and some won't. It doesn't mean you have a bad doctor but the doctor may be conservative. I am with you on those other two meds... I would want a second opinion. Its seems Amantadine is used to battle fatigue in MS too. I am thinking that looking at the side effects that possibly the anti depressant was given because the Amantadine can induce depression like TBZ can. It is always good to get a second or even third opinion if you have doubts.

Denise,

I have no idea whether your doctor is a good doctor or not, but I have a few observations. I do prefer a doctor that commuicates well.

If I read your posting accurately, you went to the doctor with preconceived ideas what the correct treatment was. If he did not prescribe Memantime, you were not going to be happy. You seem certain that you were not depressed, but insomnia and being tired are part of depression--not necessarily a symptom of HD.

A good number of doctors are not going to be very interested in prescribing Memantine. Many doctors are not keen on supplements. That does not make them disaster doctors. While Memantine might help some people, it does not help others. A prominent neuro told me that she found that Memantine is not helpful with many HD patients. If pressured, she might prescribe it.

If you go to doctors and tell them what medications you need and tell them what your diagnosis is, many doctors are not going to work well with you.

By the way, doctors prescribe lots of meds for HD that were originally made for other diseases. That does not make them the wrong meds to prescribe. Most of the meds my wife takes were originally made for another purpose.

When you find a doctor that you like, I suggest that you let him or her diagnose your situation and you follow their instructions and provide feedback on how they are working. I think you will have a better working relationship and be more satisfied in the long run.

When I read about the meds that people on this Forum are taking, I do not go to my doctor and ask for that drug. Instead, I ask the doc about the various drugs about which I hear and ask what he/she thinks of them, pros and cons, compared to what my wife is taking.



Edited 1 time(s). Last edit at 06/20/2008 11:24PM by Dave.

But she took him a research paper on the memantine, and he wouldn't even look at it. When i went to my doc at ubc, i took the research paper, said i'm quite excited and interested in this, and i said what do you think. He read the paper, and said this is very exciting, i actually have 5 other patients i have on it, and then he began to explain to me what he thinks is good about memantine, and would i like to try it, and i said yes. But it doesnt sound like this doctor wanted anything more than a one-sided dialog perhaps, i don't know.

I wonder why he decided to try you with two different meds, why not start with something weaker like seroquel, which not only helps with insomnia, is a mood elevator, but also helps muscles and balance. I think if it was me, i just would have asked more questions, and asked for other med options that would be milder to try first.



Edited 1 time(s). Last edit at 06/20/2008 11:56PM by Barb.

It's hard to know what a doctor prescribes before you get home. They just say it is this or that...an anti depressant, etc. You often have no idea whether it is strong or not. You have no idea if they suggested a high or low dose. I have read where the majority of doctors are really highly knowledgeable only on about 20-25 drugs. I am more careful now about what I think when I hear about what someone else has been prescribed however. There might be some drugs outside the standards that we all have experience with that may work in certain circumstances. I do think the person taking the medication should have some level of comfort in taking it whether it is from the doctor that you trust over time, or a second opinion, or personal research. Denice didn't have a pleasurable experience or feel she was listened to in the least. The best HD doctor in the world may not be the best doctor for everyone. Sometimes you just don't click together. In this case I think if Denice wants to try another doctor, I think that is a good idea. I think with HD in particular trust is a key factor as much as the treatment options. If a pHD as time goes on doesn't trust the doctor it would be hard to get them to go when they need them most. Denise is going early and this is a great time to find the person you like and trust.

Dave, there are no drugs which are FDA approved for use in HD. Tetrabenazine, if approved, would be the first.

HD symptoms are treated with drugs known to treat those symptoms in other patients who don't have HD. Doctors make choices among antidepressants, antichorea drugs, and antipsychotics (as needed) based on 1) known side effects that might be particularly bad for HD patients, 2) on case reports and open label studies in the literature, 3) on a very few small clinical studies, 4) exchanges of information with other doctors, and 5) what has worked in their own practice.

And of course, another factor is the individual patient's own response to whatever medication is prescribed. Variability in response may just be people's different genetic makeups, different metabolism, etc. Or in the case of HD, it may be something more. HD is variable among individuals, as we all know. There are different CAG counts, different patterns of brain damage (associated with different symptoms) and Progression varies among individuals. Chorea was once considered the defining symptom of HD, yet now we know that 1 in 8 adults with HD have more Parkinson-like symptoms. That suggests to me that there may be some patterns in who responds to what medication in HD. We just don't know at this point.

Memantine is not a supplement. It's a glutamate stablizer, FDA approved for Alzheimer's. Since excitoxicity (overstimulation of glutamate receptors) is known to be a problem in both diseases, a number of neurologists have prescribed it for their HD patients. Some patients, not all, are doing very well on it. It is in Phase II clinical trials.

Amantadine is a glutamate antagonist. One small study found it to be effective in reducing chorea but another one did not. Other glutamate antagonists have not proven to be effective, most notably remacemide in the CARE-HD study.

It is no more 'correct' for a doctor to prescribe amantadine than to prescribe memantine, given the lack of conclusive evidence for either medication. In either case, a doctor has made a decision to try something and see if it helps the patient.

Given the uncertainties in prescribing medication for HD patients, I personally would feel more comfortable with a doctor who is willing to discuss the reason for his choices and try different medications until he or she and the patient (and family members who may be helping provide feedback) are happy with the results.

Take the issue of treating depression. The most common antidepressants prescribed for HD patients are SSRI antidepressants. That makes sense since they boost BDNF which is known to be decreased in HD patients, and prolong survival time in the HD mice. However, not every HD patient will do well on SSRI antidepressants.

The diagnosis has already been made; it's Huntington's Disease. From that point, finding the right medications to treat symptoms should, in my opinion, be a collaborative process between the doctor and the patient/family with lots of feedback and review. And even medications which work well at one point in the disease process may not work well later.

In addition, it is important for any doctor to keep up with the literature. Here's a good example. Riluzole, an ALS drug, was found to reduce chorea in some small studies. Some thought that since it is a glutamate antagonist, it might be a treatment for the disease by reducing excitoxicity. Some neurologists were prescribing it for HD patients. However, a year ago, a large Phase III trial in Europe conducted over a three year period, found that it neither slowed progression nor improved symptoms.



Edited 1 time(s). Last edit at 06/21/2008 01:27AM by Marsha.

Yes, i do agree with eric, i feel when i see my hd doc, that we are a team, working together to give me the best life i can have. I feel and experience the team work and co-operation between us, and he always answers all my questions. He will even give me a choice between 3 or 4 dif meds, if i have gone to him for meds, and tell me what each one is like, and ask me which one i think i might prefer. I think you need a doc denise that you at least feel respects you and your opinion. That is how the trust is built.

Hello,

Yes the funny thing is that I have neve been depressed a day in my life or have I have never had a rage issue. He determined that becuase I had insomnia and was very tired sometimes that I must be depressed. I told him I was not. Dr. G at UBC had said that Insomnia and being tired were common symptons of HD not signs of depression. Dr G is Barbs psychiatrist who works soley with HD patients. I would trust the information if it had come out of Dr. G's mouth but not from a neuro who would not be as aware. I even explained to him that Dr. G had mentioned that these were HD symptoms but he had his mind made up and he did not even answer. I had to ask him What is the stage of HD that I am in? I also had to ask him do I have chorea? You think that he should have communicated this at the very least.

I had no clue what he was prescribing. He did not explain anything it was not until I got home and checked them both online that I realized what he had prescribed! It said for MAJOR DEPRESSION, to me that would indicate someone who was suicidal not someone who had just said that I have never been depressed 1 day in my life. I have never taken any medications like this in my life so I am a bit leary and his whole demeanor made me more leary. I am just thankful that I checked these drugs online first prior to taking them.

Barb and Eric you are right I will get another opinion before taking these meds! Barb be thankful that you have a great centre close to you.

Marsha I live in Canada and Tetrabenanine is approved here so I am not sure why he would have prescribed the AMATADINE. Do you think I should take the Amantadine or try the Tetrabenanzine?

Thank you everyone so much for all of your help again!

Denise

Hey guys.
Denise is coming over to my place today. I would like to point my finger at the Canadian HD who canceled my support group because Denise is in the area and another one whose support has been eliminated.
At the meeting in Toronto they announced the society's intention of providing internet support groups. I am thinking about getting a passport so we can drive to buffalo or rochester for support groups which is so ridiculous when you think about it. Reading about HD on the net is fine and the society is at least there, but nothing replaces geting together with other people in the same boat which is why people go to conventions and support groups. I also asked at St.Joes here in Guelph where some guelphians are embedded in LTC, and they do not have support groups. They also do not do music therapy
sigh.
Dusty
Dusty

Denise, if you are not bothered by chorea, I am not sure why you would take amantadine or tetrabenazine.

Hello Marsha and Dusty,

The chorea that I do have is mild so I am not sure why he would have given me a prescription? If it was severe I would definitley take it, and I do know at that stage an anti-depressant would have to be prescribed at the same time. I believe that memantine would have helped with the cognitive which I am really having a problem with! lol

I had brought him tons of information sheets on every study and drug that is being used. Tetra., Memantine, studies on people with HD showing they had problems sleeping and the best non-toxic drug to use. I put them down for him to see but he did not even look at them.

The thing that does not make any sense at all is that he had prescribed such a high anti-depressant... considering that I have never been depressed I told him this as well.

Yes I am going to Dusty's place today, she is a real sweetheart!

Thanks again Marsha and Dusty!

Have a great day,

Denise

I just wanted to add that my daughter takes amantadine for chorea. We tried many medications before amantadine but they had to many side affects. Her chorea was very severe. The amantadine helped her chorea and did not make her so drowsy,etc. She also takes mirtazapine for depression. They both seem to have worked well for her.

I don't know about anyone else, but when when pHD started to show signs of depression, he did not know he was. The doctor prescribed the meds and he took them...fighting him all the way. It was not until months later that he realized the doctor was correct. Once he realized, it was amazing because he didn't need the meds anymore. It was like he just needed to admit it to himself. He has not taken them in over 2 years.

when I used to take my ex, Joe to his Neuro, neuro psych and social worker, I'd go with a notebook filled with all the latest and greatest that I'd get off of the lighthouse. Different studies, meds suppliments and sometimes I had imformation before THEY did. They asked the SW to talk to me. Seems they did NOT appreciate my Notebook and all my questions and notetaking. I told the SW... "well. this is what I have to say about that. I'm NOT going to play dumb for ANYONE.. I WILL stay on top of things for Joe, and just as I have to get used to these Dr's, THEY have to get used to ME.!" I had my ups and downs with that neuro but we ended up respecting each other and were never afraid to have "words" with each other and express ourselves after that. HE EVEN appologized to me once! So speak your mind and don't lie down and play dead. Learn their personalities and work with it. Just don't back down. Pat

Thanks so much Al, Sally and Pat I really appreciate all of your assistance it is greatly appreciated!

Al, since my chorea is only very minor at this point I think I will hold off on the Amantadine until a bit later as right now it is very minor. I will remember when it gets more severe that this combination worked for your daughter which is great news for her!

As Dr. G. had mentioned 50% of the people who have HD are depressed not 100%.

I had started noticing changes within myself. Problems walking, falling down the stairs problems typing, reading, focusing, the ability to do my job working at a computer all day (EA) work was no longer possible. So I thougt maybe these are HD symtoms. I checked the list of symptoms and I had most of the cognitive ones. So I had the testing done. I knew it was going to be postitive and I had told the genetic Dr.. I was simply going there for a confirmation and to get my disability rolling. I am one of those people if something is white it is white, if it is black it is black never grey! I knew my chances as well as my siblings was 50-50. I am able to ride the waves over any problems that have arisen in my life without lashing out or being depressed this has not been me. I think people are wired differently when it comes to that. I got my results approx 3.5 months ago and it only took 3 weeks to absorb it fully and move on. I however knew that I had HD, my mom would rather rationalize the symptoms I had. lol The same thing with the depression if I had noticed I was depressed I would have mentioned this to him regardless.

Pat, thanks for your input! You are right. The Neuros at this paricular clinic in Toronto is only there 1 day per month treating HD. The amount of time that he spent with me was the problem as well. 5 to 10 minutes. The neuro exam was done by a student Neuro. At this point I will find another neuro who can take the time and answer my questions, provide information to me, as well as read literature or take it to read later. But thanks for the re-assurance Pat I really appreciate it.

Thanks again! Have a great weekend,

Denise

Denise,
You are very strong and courageous. I do admire you. I agree it is important to have a doctor who will take time for you. Although at times I have been frustrated our neuro will take the time to listen to us and at times we have been in the office for an hour. He also video tapes Michelle at each visit to chart her progression. He will soon be retiring so we will probably have to find someone else. You will find the right one for you so keep searching.

My neurologist is very busy. She treats many Parkinson's - as well as Huntington's patients.

As well as doing research and writing papers. Nevertheless, she has spent all of the time necessary to answer my questions. I was very impressed.

Because - I'll be honest with you. Drs CERTAINLY have thier time constraints.

But any doctor who's too arrogant to answer your questions is OUTTA HERE, in my book.

They're being paid good money to give expert medical advice - IF THEY'RE NOT GIVING IT THE THE VERY PERSON WHO MOST NEEDS IT - THEN THEY'RE HISTORY.

HISTORY!!!

Doctor's are exprert consultants. They're NOT Gods!

when i go out to ubc for a yearly, i get a full hour with the neuro, and a full hour with dr g, then they even consult together before i am sent on my way. I cannot believe you only got 10 mins, and a student did your exam, i'm sorry, but i'd be outta there too. You need a much better doctor.

One thing that I have to add, though, Denise.

"Major depression" has nothing to do with being "suicidal".

I was diagnosed with "major depression" over 2 decades ago - and I'm still very much alive!

I didn't really relate very much to the term. After all, I prided myself on seeing the positive side of things.

I enjoyed "smelling the roses".

I was known for my off-beat and irrepressible sense of humor.

"Who, me - depressed???"

But quite often depression has nothing to do with overt symptoms. Like walking around in a gloomy little "funk".

Clinical depression (due to a neurotransmitter malfunction) - can express itself in much more subtle (but just as debilitating) ways.

Motivation, for one. Being in a competitive field, I often wondered why "networking" and "socializing" were so much more difficult for me than they appeared to be for most of my peers.

I had to read books & harrass my Dr (a different one) - to write me an anti-depressant prescription - since "talk therapy" was NOT working, in my case.

He reluctantly complied. And I was amazed at how much it helped.

"So THIS is how it is to feel NORMAL!", I constantly wondered to myself!

Wow!

For a while there, there was a big flap from people who didn't understand the issue of clinical, unipolar depression that Prozac was some sort of "designer drug" that people were using to gain some sort of "advantage" over "normal people".

NONSENSE!

I was using it simply to FEEL NORMAL. To be on a "level playing-field".

You can vaguely sense that you're not on a level playing-field with the average person - but it's often not possible to fully understand the impact that has had on your life until you receive the proper treatment.

It may well be "talk-therapy" - or, as in my case, it might require the proper meds!

Whatever works...........



Edited 2 time(s). Last edit at 06/22/2008 08:57PM by JL.