Steph555 Posted June 19, 2013 Report Posted June 19, 2013 I have been taking Adderall XL for two years and have found it to be extremely useful in controlling the headaches, brain fog and fatigue associated with my POTS. My employer recently changed insurance companies. Previously, my Adderall rx's were approved with no question. After the change to a new company, however, I was questioned about the dosage--I was taking 10 mg in the morning and another 10 mg at noon and the insurance company wanted me to take one 20 mg dose. We have unsuccessfully tried to explain that the single, larger dose can trigger the tachycardia associated with POTS. I was ready to concede and just take one 10 mg dose, but now the insurance company says that, after looking into the situation, they question this "off label" use of Adderall at all. They are asking for peer reviewed journal articles that support the use of Adderall for POTS. Can anyone point me towards some information that might help me make my case to the insurance company? The Adderall has probably been the single most useful component of my POTS management and I dread going back to life without it.Thanks in advance for any help anyone can provide. Quote
Guest Alex Posted June 19, 2013 Report Posted June 19, 2013 Steph, sorry your insurance company is giving you such a hard time. As far as peer reviewed journal articles mentioning Adderall for POTS I can only think of one. http://www.ncbi.nlm.nih.gov/pubmed/21947988 you can access its full text if you go to the right upper corner of the page where it says "full text available at www.cardiologyjournal.org I hope this helps. Best, Alex Quote
Steph555 Posted June 19, 2013 Author Report Posted June 19, 2013 Alex,Thanks for the referral. I had found this article, but wasn't sure if it would count toward making my case or not. One of the tables showed that 4 out of 4 patients responded to Adderall but, in the body of the article, they never recommend it as a treatment and, in the conclusion, they state that there are no standardized treatment protocols.If anyone else has any ideas, I would love your input.Thanks! Quote
Christy_D Posted June 19, 2013 Report Posted June 19, 2013 My son's doctors are the ones who always intervene and communicate with the insurance company and explain the reason for the medications, or usually the odd dosages. Can your doctor speak with them? Once the doctor calls them, they have been approved for us. Quote
Steph555 Posted June 19, 2013 Author Report Posted June 19, 2013 We have done the "letter of medical necessity" and they keep asking for more. Now they are saying that I need an "on label" diagnosis (ADHD or narcolepsy) or the peer reviewed journal articles that support using Adderall for POTS. :-( Quote
Agreeky Posted June 19, 2013 Report Posted June 19, 2013 Steph, Could you possibly get a ADHD diagnosis? I know it might not be very ethical. But I know some psychiatrists that give Adderall like candy. My friend just wanted to lose weight and he gave her Adderall(told insurance she had ADD) Just saying it is worth a shot maybe go that route. Quote
looneymom Posted June 19, 2013 Report Posted June 19, 2013 ADHD medications are used for many different diagnosis. My son is on one for vocal tics but is prescribed by a neurologist. Could a different type of doctor prescribe it and get it through insurance.If neurotransmitters are not balanced, maybe some of these ADHD medications could help some more POTS patients. Might make an interesting study. Quote
Lethargic Smiles Posted June 20, 2013 Report Posted June 20, 2013 You poor thing! I'd get nasty if they tried taking away my Adderall. I am prescribed 10mg up to 4x/day, but on a normal day only take 15mg. Without it, I am bedridden.I have one article that hasn't been mentioned. There is an article I have called Postural Orthostatic Tachycardia Syndrome (POTS) by Koichi Mixumaki MD PhD. It is a long one. Under pharmacological interventions, on the journal page 302, methylphenidate (Ritalin) is listed.Methylphenidate causes vasoconstriction by increasing presynaptic catecholamine release, decreasing reuptake, and inhibiting monoamine oxidase. Methylphenidate is useful for treatment of vasovagal syncope and suggested to reduce postural symptoms in POTS; however there is no evidence for this. It isn't ideal with the whole "however there is no evidence for this" but I thought I'd throw it out there anyway. Isn't POTS under the umbrella of vasovagal syncope? Due to my trying to save ink and paper, I do not have the page with the citation the author used for his statement about using Ritalin in its treatment, but there is a notation that he did indeed have a source. Maybe you could find peer-reviewed scientific articles about Adderall and vasovagal syncope?Early on, my diagnosis was hyper-somnolence and they gave me Adderall after narcolepsy meds gave me severe migraines. I'm unsure if this is an off label use or not. Quote
looneymom Posted June 20, 2013 Report Posted June 20, 2013 Hi StephInsurance companies can really be a pain. Have you heard anything back? I was able to find the article on line that Lethargic Smiles mentioned. Have you had any testing that indicates problems with neurotransmitters. These medications are also used for chemical imbalances in the brain, which may be why it helps you so much. My son has had the blood work that indicates his body is not making serotonin or dopamine. If your doctor could give the connection that way maybe your insurance would give in. You mentioned this medication helped you with headaches, brain fog, and fatigue. Did you ever have tremors with your diagnosis in the beginning? Just wondering if this medication would help with that symptom. Quote
Guest Alex Posted June 21, 2013 Report Posted June 21, 2013 Steph,I was able to locate an article about the use of methylphenidate (ritalin) in the treatment of refractory POTS.You can find the abstract of the article below. If you are interested in the full text article, please feel free to PM me so we can figure a way for me to share it with you.http://www.ncbi.nlm.nih.gov/pubmed/20460983 Use of methylphenidate in the treatment of patients suffering from refractory postural tachycardia syndrome.Kanjwal K, Saeed B, Karabin B, Kanjwal Y, Grubb BP. SourceSection of Electrophysiology, Division of Cardiology, Department of Medicine, University of Toledo Medical Center, Toledo, OH 43614, USA. AbstractMethylphenidate has been shown to be an effective therapy in patients with refractory neurocardiogenic syncope. However, the role of methylphenidate in patients suffering from postural orthostatic tachycardia (POTS) has not been reported. The study was approved by the institutional review board. A retrospective nonrandomized analysis was preformed on 24 patients evaluated at our autonomic center for POTS from 2003 to 2010. The diagnosis of POTS was based on patient history, physical examination, and response to head up tilt table testing. The mean follow-up period was 9 ± 3 months. The patients were included in the current study if they had a diagnosis of POTS with severe symptoms of orthostatic intolerance and were refractory to the commonly used medications. All of these patients were started on methylphenidate and the response to therapy was considered successful if it provided symptomatic relief. Twenty-four patients (age 28 ± 12, 20 women) met inclusion criterion for this study. The response to treatment was assed subjectively in each patient and was collected in a retrospective fashion from patient charts and physician communications. Four patients reported side effects in the form of nausea and 2 ultimately had to discontinue the treatment. Another 4 patients had a follow-up of less than 6 months. Thus, only 18 patients who received methylphenidate completed the follow-up of 6 months. Out of these 18 patients, 14 (77%) patients reported marked improvement in their symptoms. Nine out of 12 patients who had recurrent episodes of syncope reported no syncope at 6 months of follow-up. Fourteen (77%) patients reported marked improvement in their symptoms of fatigue and presyncope. Four patients continue to have symptoms of orthostatic intolerance and 3 continued to have recurrent episodes of syncope. Methylphenidate may be beneficial in patients with otherwise refractory postural tachycardia syndrome.Best,Alex Quote
Steph555 Posted June 21, 2013 Author Report Posted June 21, 2013 Thanks so much to all of you for your help! I keep getting different answers from the insurance company as to what exactly I have to prove to their doctor to get the Adderall approved. It sounds like because it went as far as their doctor already, that it might be harder to get it changed now. I was told that I was having "narcoleptic episodes" after a sleep study years ago. I do not have the actual study results, just my doctor's entry in my chart after he spoke to the neurologist who did the study. The insurance company said that my insurance would cover another sleep study, which is frustrating because that would cost more than the Adderall and require me to go off meds first, become unconditioned, etc. , etc.I have to decide if my best chance is to prove the use of Adderall in POTS and my POTS testing or if I want to see if I would qualify for an ADHD diagnosis. I suppose the fact that that I have brain fog might be an indicator that I have ADHD as part of the POTS spectrum of symptoms.I do have a study that shows that I have very low dopamine levels, but I feel like no one is considering the chemistry at work here. They just want the diagnosis to be what they want it to be.I have a feeling that, even if I can make my case, they are going to make me try Ritalin first and fail it before they approve the Adderall. Has anyone tried both Ritalin and Adderall? Did they work the same for you? Quote
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