My doctor won't prescribe "off label" drugs. And I just got a dear john letter basically saying good luck. Get help elsewhere. I'm in California, but willing to do telemedicine.
I have seen two psychiatrists that are basically singing the same song. No, off label drugs. They are just giving me the brush-off. What doctor has not prescribed any off label drugs?
My case is severe, super depressed, super anxious, yet he just drops me because I don't fit in his little box of recommend toys. I have even questioned my reason to be alive.
I fall in the class of can't really help you cause of your medical history. Without going into many details. I have A-fib and since it was never properly diagnosed, I had a TIA/Stroke (they change it according to doctors) over many years ago.
Stimulants are not good since it contradicts my medical history (so he says) and non stimulants like Strattera and Qelbree exacerbates my RLS (restless leg syndrome) condition and tinnitus.
I have two medical conditions that require and depends on the dopamine system, yet they don't see the connection.
I asked both doctors if they would be willing to prescribe off label Amantadine. It showed some improvement, but it was a small study. I am willing to try it since I have no other options. And all I get is an off label drug can't do it. Like a broken record. BTW, they are going to conduct studies to see if it helps people with long-lasting Covid syndrome.
They pharma company rebrand the same old tired stimulants, and they have tons of them and yet make no effort in discovering new options for people like me.
Even Strattera and Qelbree are really just SNRI's which have been around for a long time. To this day, they don't know exactly how it works. Yet they give out like candy.
If anyone can recommend a doctor who is willing to prescribe Amantadine can you please let me know. Also, if anyone is taking it, is it helping your systems? Any feedback would be great. Is it horrible or good. I know some doctors prescribe it since it was in the book of ADHD 2.0. You know the caring doctors. I know they are out there who are willing to listen to your needs and symptoms.
I'm sick and tired with severe ADHD, living in the land of hard to find good doctors.
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RanchoguyCA
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Well, since Dr. Edward Hallowell is one of the coauthors of "ADHD 2.0" and one of the co-founders of the Hallowell Todaro ADHD Center, why don't you contact the California office of his company?
The best info I can find about the studies to treat ADHD with Amantadine said that all the studies were done with children and adolescents.
• Perhaps you can contact the people who conducted those studies to see if they plan to do the same studies with adults who have ADHD, and if so then how could you be considered.
I just checked the pricing for the California office and WOW.
Medical Assessment/Diagnosis completed by the Medical Director
This option is available to new clients that are currently working with a therapist outside of Hallowell Todaro ADHD Center and are seeking medication management services. These clients will not require a clinical assessment prior to receiving medication management services through the center.
Appointment #1 - up to 90 minutes, $1,050
Appointment #2 - up to 45 minutes, $580**
Appointment #3 - up to 30 minutes, $580
** Clients are required to attend the second appointment in person at our Mountain View office.
So in addition to the cost, I have to fly up to Mountain View since I live in Southern California.
I'm on the wrong field, lol.
It's obvious this is ADHD care for the rich and famous.
To me, it's a lot of money to just try a medication that may or may not work.
Not trying to put your suggestion down. Thought it was great.
Oh my! I expected it to be pricey, but that's about double the cost that I expected!
I know that any publicly advertised prices from a doctor or hospital are the amount they start negotiating with insurance companies over.
(Insurance companies haggle to get it down to as low as possible, so list prices have to start out very high. Calling a practice and telling them you're paying out-of-pocket might get you a lower rate. For instance, when I got my wisdom teeth removed, I didn't have insurance but was initially quoted the price as if I did...but when I arrived to pay and they learned that I was paying for the procedure by myself, they reduced my bill by 40%.)
But, if a doctor is world famous like Dr. Hallowell, they will be sought out by many people who can afford to pay what they're asking.
~~~
Your health insurance company ought to have a directory or list of in-network providers. Perhaps you can arrange for a brief (free) phone interview with a few psychiatrists so that you can ask them questions about how they conduct treatment. Then, you could ask whether they consider doing off-label prescriptions if there are medical studies that support such treatment.
(I'm lucky that my ADHD is treated effectively enough on a regular
Yes, I agree, thought it was crazy. I don't believe they accept insurance. He is a famous doctor. But I won't be pursuing him or his practice. Reading his books are just fine. Though, seeing this as a gift is a little hard to swallow. But perhaps one day I will change my perspective.
I will look to see what my insurance has to offer. Also, will be asking the doctors whether they prescribe Amantadine before going through a lot of tests and answering questions to get nowhere.
I feel frustrated with the system. All trying to make a buck on someone else's problems. But I'm not surprised, just disappointed.
Glad to hear your medication is working for you, so important.
It's an antidepressant, but not the SSRI type. One of the ways it works is by dopamine deficiency, but it's not a stimulant. It has been widely used (off-label) to treat ADHD, often in combination with Intuniv (guanfacine, a high blood pressure medication which has been found to treat ADHD symptoms as well, particularly the emotional dysregulation symptoms).
Hi thanks for your suggestion but yes I have tried it. It made my tinnitus sound really loud. I have tried it several times but couldn't stand the noise.
Some people can have improved tinnitus symptoms by taking a dopamine agonist (a medication that increases dopamine availability, such as Wellbutrin and stimulants do).
However, it has been noted that at least some dopamine agonists (such as Adderall) can cause tinnitus symptoms to get worse.
Some people can have improved tinnitus by taking a dopamine antagonist (a medication which reduces available dopamine)...but that would probably make ADHD symptoms worse.
~~~~~
I also previously learned that another neurotransmitter that can cause an increase in tinnitus is glutamate. (Glutamate is an "excitory" neurotransmitter. It basically tells nerves to start transmitting. The opposite is GABA, a neurotransmitter that signals nerves to stop transmitting.)
[The connection between dopamine and glutemate]
I remember an episode of the Huberman Lab podcast in which Dr. Huberman mentioned that both glutemate and dopamine are released by the same nerve endings.
Excess glutemate or a deficiency of GABA have been proposed to be a possible cause of tinnitus (or a host of other excitatory issues, like chronic pain, migraines, insomnia, restless leg syndrome, intrusive thoughts, and even gut motility issues). {I researched this a lot because I was trying to help my ex-wife (prior to our divorce) because she's suffered from all of those issues. ~~~ Based on user testimonials on product reviews, I thought a GABA supplement would help her. She didn't try it. I ended up trying the GABA supplements, and I can say that they definitely have helped me with insomnia.}
Great information. Wellbutrin made my tinnitus worse and so did Qelbree, which I liked, but the noise was too intense, so I had to stop it.
When I read what your ex-wife profile, a bell went off. That's me in a nutshell, except chronic pain. I have RLS, migraines, insomnia and crazy thoughts at night.
The thoughts at night can be so bad that it can keep me up until 6am. Bad insomnia since my thoughts run like crazy. I call it chatty Cathy like the doll, lol. Sometimes bad thoughts other times just thought jumping from one to the next. I hear that is common in ADHD. I was hoping with the right medication it would help with the thoughts.
I am trying Tyrosine. It helps me a bit but has increased my tinnitus a bit. I think that I need some dopamine since it will definitely help with my RLS.
I should check out GABA supplements and give it a try. Anything to make me fall asleep.
Surprisingly, there hasn't been much study of the connection between excess glutemate (or a deficiency in GABA) and all those things.
There has been some research, like how the knowledge that GABA receptors have an important role in reducing pain...and thus the medication gabapentin was developed to target those GABA receptors. (My grandma takes gabapentin for pain due to fibromyalgia and other health issues. She's nearing 100 years old. However, I can't suggest GABA for her, because it might interfere with the gabapentin.)
It's mostly anecdotal that GABA supplements work. A lot of doctors believe that dietary GABA doesn't cross the blood-brain barrier (because of a study done about 40 years ago). However, there is some modern thinking that there might be a hit undiscovered mechanism for transporting gaba across the blood-brain barrier.
All I can tell you is, it works for me to help quiet my thoughts, sometimes to help reduce pain but I don't have pain that often, and to help me sleep. I've been relying on it for almost 2 years now.
Please let me know if you find a provider that will prescribe Amantadine. My son cannot take stimulants due to Tourette’s and didn’t see an improvement on non-stimulants. We’ve tried 3 different providers and all said no. It’s very frustrating that no one will prescribe it even though it’s been very well received in several studies, and with less side effects than stimulants. I read that there is no $ to be made of it so FDA won’t approve.
I will certainly let you know. It is frustrating, specially when the study was conducted on children. Check out clinical trials .gov and just type Amantadine. They even trying it out on long term Covid symptoms but in Spain.
I think if we continue asking doctors and maybe email the Dr Hallowell and Dr Ratey asking them for help and/or if they know of one.
I agree if there is no money they won't approve it.
It doesn't kick in like a stimulant.It's a supplement, and it seems to give me a light lift. Since I've been taking it, the main thing that I notice is that I don't get depressed as often or as severely. I feel like I'm only able to focus a tiny bit better.
It provides the precursor amino acid to dopamine: l-dopa. It's up to my body to decide to make dopamine from it.
I shifted to taking it with my bedtime supplements because I noticed that I got sleepy mid-morning after taking it with breakfast.
Upping the amount didn't do anything more to help, so I went back to single dose.
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