I'm male, almost 31, diagnosed with AMN and adrenal insufficiency almost two years ago.
I have no energy. Just none. I get ten hours of sleep most nights and still feel exhausted in the morning. I saw my endocrinologist last Monday and he ordered blood tests. My testosterone and thyroid are fine, but my ACTH levels are very high. This is concerning because I have increased the dosage of hydrocortisone I take twice so far. When I was first diagnosed, I began taking 10 mg in the morning and 10 mg at night. When that didn't lower my ACTH levels enough, the endocrinologist told me to take 20 mg in the morning and 10 mg at night. That helped balance my levels as of a year ago. Now he wants me to increase to 20 mg in the morning and 20 mg at night. I wonder if this is sustainable, and if I am going to have to keep increasing the dosage over the course of my life.
The biggest issue is I feel so much difficulty just getting through the day, no matter what I am doing. I never thought I would consider applying for disability assistance at this young of an age, but it is now a real consideration. This lack of energy is seriously affecting my work, my relationships, and my general outlook. I would greatly appreciate any encouragement or wisdom that anyone on this forum might be able to impart. Thank you!
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Aaron98
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I'm 41 and I've had Addisons since 2002 I take 10mg as soon as I wake I take 5mg at 1pm and 5mg at 4pm of Hydrocostisone and my endocrinologist has stressed to me not to take any later than about 5pm as the body naturally doesn't produce any after this time! I think fatigue is part of the disease you need to keep positive and fight it!
Thanks for the advice, Steve. My endocrinologist has never stated to take the evening dosage before 5pm, only that they should be taken at the same times every day. I will try to start taking the second dosage before 5pm, and see if that helps. Do you take anything else to help with fatigue?
Thank you very much for your reply, monkeybus. I am very interested in taking Modafinil, and I pray that it will work for me. I have an appointment with my GP tomorrow morning, and will let him know that I would like to get a prescription.
I have several questions for you and any others who take Modafinil. How long have you been taking it? What dosage? What time(s) of day do you take it? I feel exhausted in the mornings, even after what should have been a full night's sleep. Then I am yawning literally all day. Do you think I would have to take some upon waking, and then more in the afternoon?
It seems that mod4all.com sells Modafinil produced by Sun Pharma in India. Do you have concerns about this being a reputable company?
Thank you again for your reply. I cannot tell you how much I appreciate it. Reading some of your past posts about fatigue really struck a chord with me - stuff about feeling tired all day, going to bed at 8pm, etc. Last night I slept for nearly 12 hours. That cannot be healthy. I really am nearing the end of my rope.
Sun Pharma, safe? I know not. Hasn't given me brain damage in over 2 years. I'm not worried.
I used to take 50mg in the morning, then re-dose as and when. But I was still fighting the fatigue. I take 200mg for breakfast and it carries me through the day. Sometimes I take less, depends on what I have planned for the day.
Helps with my spasticity as well. Walking is hard work for me, can concentrate on anything on Modafinil.
Thanks again for your reply, monkeybus. I had my appointment with my GP today, and he prescribed Modafinil (100mg) and Citalopram (10mg) for depression/anxiety. I am going to start Citalopram today and take it a few days, and then test the Modafinil.
My insurance actually saved me a ton of money on the Modafinil, which is interesting, because it doesn't for most of my medications.
Thanks for including those medical studies on Modafinil, as well. Very interesting to read.
I have never been one to aggressively seek medication. I've never experimented with recreational drugs, and have no desire to. I really don't like to take unnecessary medication, but if Modafinil can help give me my life back, I will become its biggest proponent.
Modafinil ain't recreational, but for me it is so enjoyable just to be awake, play with my son, go round the shops with my wife, work. You know what I mean.
Let us all know how you get on. For me, I was converted 45 minutes after I took the first tablet.
I was on antidepressants last year, get off them asap. Some genuine horror stories about withdrawal online. I took them for a month. Worked very hard on getting my head back together.
Every medicine that's been beneficial to my disease, I've had to aggressively demand (Lyrica, Gabapentin, Modafinil, 4-AP).
Anyway, take care comrade. Let us all know how you get on.
Thanks for your reply, Cherie. It seems so odd to me that my endocrinologist never mentioned taking the second dosage before 5pm. That would seem like important information to convey to a patient.
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