[Info] New neurologist :(

[Debbie_1950]

Met with a new neurologist last week. I am currently in an HMO and my former neurologist wanted me to see a new neurologist (fresh out of school) to discuss a new medication regimen.

I was given Onfi, which is a benzo to be taken once a day, 5 mg, and at the end of 7 days to suddenly stop the Klonopin (which is also a benzo) I have been on for 30 years. She gave me no reason, she was not easy to talk to. I didn't get why I was substituting one benzo for another. I told her that the last time I suddenly stopped Klonopin I thought I was going to die due to the withdrawal effects. She felt the Onfi would take the place of Klonopin and therefore I would experience no side effects.

I am concerned about her regime she suggested, I fear suddenly stopping any drug, esp. a benzo. I did send her off an internal email letting her know that to suddenly stop any medication like this I would need medical supervision, especially at my age (65 years). Also, the Klonopin covered my panic and anxiety and without Klonopin I would become housebound due to agoraphobia coming back.

Will see how she responds and if I don't like her response may be forced to go outside the plan for a second opinion.

I also posted in another room about the high ammonia levels and liver disease I developed while on Depakote, so I may be taken off of Depakote also, but she did say she would tell me to immediately stop the Depakote as well. I have no one to go with me to help me advocate with this new neurologist, so decided to start here for some suggestions and support. Thank you

Debbie

 

[Nakamova]

Hey Debbie, welcome to CWE!

You deserve a neurologist who will take the time to listen to your concerns and explain her recommendations for your care. It sounds like this new neuro is completely lacking. It's a pain to go out of network but I agree that you should go ahead and do so for a second opinion.

Stopping Klonopin suddenly -- especially after a 30 year history with it -- can put you at risk for seizures and other nasty withdrawal symptoms. Even if you'd be swapping in another benzo like Onfi, 7 days is way too soon to know if or how well it will work for you.

 

[Debbie_1950]

Thank you Nakamova for your response My HMO is well known for spending less than 10 minutes with patients, even new ones. She never looked up at me, but busied herself with moving her bangs to the side so much so that I wanted to tell her to either pin back the bangs or stop the session until she got control of her hair, which was greasy too. She spoke poor English and I had to ask her to spell out what she was saying many times. So, there was a language barrier too.

I will also be talking to my psych doc who prescribes the Klonopin to me which is outside the HMO too. He has wanted me to see a colleague that he want to school with and who is well know in neurology, so when I speak to my psych doc will get that referral and go outside the HMO for a second opinion. The two days I took the Onfi, left me overly sedated and very ill.

Again, thank you Nakamova for your support !!

Debbie

 

[Frink]

I will not deal with a Dr who will not work with me.
If they cannot make a logical argument for their plan of care and explain everything about their plan and theory and the benefits of their new drug regime over my old one, then I tell them to send in a better Dr.

Sounds like you need a better Dr.

 

[Kgartner]

I am also very confused by your doctor's advice. There are actually some possible good reasons to substitute Onfi for Klonopin - it's a benzo, but has a different molecular structure, and seems to be tolerated better over the long term than many other benzos. But the fact that she did not explain any of that makes me suspicious. And to go off klonopin like that so abruptly sounds like a very bad idea, and is not consistent with anything I have heard or read about that.

Another worry is that I don't think that 5 mg is even close to a therapeutic dose for Onfi, at least for seizures. My daughter was started at 20mg/day and ultimately went up to 55mg/day before we finally gave in and realized that it would not work well for her. She has been tapering it for 2 years (sllloooowwwwwlly which is the way to taper benzos) and is now down to 15mg/day.

You definitely need more of an explanation, and possibly a second opinion.

 

[Debbie_1950]

Hi Frink My plan at this point is to go outside my HMO for a second opinion. I have been thru soo many of these HMO doctors that I am wise to their ways and after going thru 7 neurologists to get to my last one that I got along with and that we spoke the same language (I had to keep asking this new doctor to write down what she was saying due to her language barrier) I am very disappointed and my gut reaction is that she will not work with me. The fact that she left the room before offering me a time to ask questions and never coming back but gave paperwork to a nurse to give to me was very telling. I will give her one day to respond to my email and in the meantime will be looking for another neurologist outside the plan.

Debbie

 

[Debbie_1950]

Kgartner ~ Thank you for explaining the difference between the two benzos and sharing your daughters story. I did look up the picture of the molecular structure and saw how different it was, but you are correct, it's up to the doctor to do the explaining, not for me to do all this research on her behalf.

I had a doctor tell me once that since I have been on Klonopin for the past 30 years, I may never be able to go off it it without doing irreparable harm to me. With that said, I have always been cautious with any doctor prescribing me to suddenly go off of it.

I will wait to see what she has to say in her email tomorrow and in the meantime I will be searching for an out of network neurologist.

Hugs,

Debbie

 

[Debbie_1950]

Just found out this morning that my new neurologist left town and won't be back for 2 weeks The nurse manager that responded to my email gave me the option of giving my neurologist's covering doctor my issues but I said that I would wait. I did stop taking the Onfi.

I contacted my primary to get started on treating the high ammonia levels, I don't want to wait on this. I am now having bodywide itching and I only get relief from that by taking Lactulose. I have some leftover Lactulose and have started taking it now. Since the new neurologist has not addressed how to treat the ammonia I am taking it to my primary and will go from there. Lactulose will bind with the ammonia to start to get it out of my body. I had hoped to start going off of Depakote now to lower the ammonia levels, if that is possible, but will wait until the new neurologist returns. In the meantime I did find two Epileptologists in my area that I am looking into. Like any new doctor, it's scary to start all over again. This would also mean going out of network which will be a huge cost to me.

Debbie

 

[Debbie_1950]

Well, here I am 11 days later and finally that new neurologist called me to discuss a new approach. I had sent her off 6 emails listing my complaints about her position on medications to put me on, etc and finally 11 days later she responds.

In the meantime, last week, I decided to start titrating down from the Depakote I am on, on my own without medical advice, knowing I will be taken off of this drug due to my liver disease and the ammonia, eventually. I went down to fast........... the withdrawals were awful, I was soo sick and the only way to stop the withdrawals was to go back on the Depakote. I had no idea I would be that affected and now not looking forward to starting to come off of this drug again. She wants me to talk to my psych doc about how fast to come off of Depakote due to the fact it has mood stabilizing effects, which I need.

Then she recommended two other new drugs......... one is Zonegram and the other is Vimpac. Zonegram has more coverage for migraines, which I have and Vimpac has no coverage for that. Vimpac has more coverage for seizures and is a stronger medication but no coverage for migraine. As I age I am having more difficulty with sedation issues and with my balance and daily dizziness I worry about adding more sedation. Neither have mood stabilizing properties.

I have been on Depakote for 3 years.

She fought me about prescribing Imitrex for my migraines as she felt it was contraindicated due to migraine aura. She finally agreed to prescribe this.

Then I went on to explain to her that being a new patient and meeting her for the first time, not being able to ask questions at the end of the exam and her suddenly leaving the room and not coming back and then leaving for a week right after that was not a good idea, especially putting me on new medication. I wanted to let her know that I had always had my former neurologist at arms length and yes, I have been spoiled by him and to leave him has been difficult and to have that experience with her really soured my opinion of her.

I started on Lactalose to help with the itching due to the ammonia issues. I looked back on her handwritten notes and she wanted me to have blood tests every 5 weeks for 86 weeks to make a determination about the ammonia issues and I was flabbergasted about this as she already had a year of ammonia blood tests conducted so why would she want 86 more weeks of blood tests......... shaking my head. So, will be going back to ammonia blood tests every 3 months and leave it at that.

It's my body and so I get to make some decisions and advocate for myself.

I did find the name of a epileptologist (spell) in my neighborhood and looked him up. He's teaching at a local university now and is very well published and honored. I'm leaning towards seeing him for a second opinion before I embark on any changes. He also heads my local teaching hospital, so not sure if he may be too busy for what I need, but it might be worth a try. This new neurologist I am seeing now thru my HMO is brand new, just out of college and obviously has no patient care experience.

If anyone has had experience with Zonegram or Vimpac, would love to hear. Thank you for listening !!

Debbie

 

[Nakamova]

Definitely be careful in the future tapering on or off meds -- it's ALWAYS better to go as slowly as possible to avoid side effects or seizure risks. Withdrawal side effects are no fun, especially when you've been on a medication for some time.

If you can, go ahead and get a second opinion -- it's a good idea when you have all sorts of medications in the mix. I responded to your question about Vimpat and Zonegran on your other thread: http://www.coping-with-epilepsy.com/forums/f22/vimpat-v-zonegran-26780/

 

[Frink]

L-Carnitine has been used to treat valproate induced liver damage and rising ammonia levels.

https://www.ncbi.nlm.nih.gov/pubmed/19280426

 

[Debbie_1950]

Nakamova ~ I have arranged a second opinion outside my HMO with an epileptologist in 4 weeks. I am now going down very slowly on the Depakote (learned my lesson earlier) and when any withdrawal effects appear, I just open the Sprinkles and add to applesauce and the uncomfortable effects disappear. So far it's successful. I will maintain this until I introduce a new AED in 4 weeks. By then, hopefully, the worst of the withdrawals will be gone. I will read your next response on the other link, thank you.

Thank you Frink for the link which I have read. I find it interesting that not one of my doctors at this HMO have shown any interest in my liver damage and I have had to fight for a standard of care. I copied this to a word document and am starting a file on what to do to help myself should things become critical. It's all about helping myself thru all of your smart suggestions, since none of my doctors seem to care less.

Debbie

 

[seagull]

I take cloberzam I think that benzo my nuro hinted at stopping them but like you I been on them many years and I would dread the withdrawal I went a week without them and I wasnot to good but I never knew eating sweets help if I known I would tried it

 

[Debbie_1950]

Thank you Seagull Were you able to completely get off of your benzo without many side effects? How long were you on this benzo?

Thank you for sharing adding sweets during a withdrawal.

Debbie