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Unread 08-29-2013, 01:34 AM   #1
Chazwick
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Cool 13 months and still physically miserable, on and off

Hey. This seemed like the right place to post this, hopefully it is. I apologize in advance for any typos (blame autocorrect! Or the small keyboard). Yesterday was 13 months clean for me. It's great, and considering the pain and misery of active addiction, I really can't complain too much, life is exponentially better.

I have been having a problem since I got clean, likely before too, but the withdrawal and drug use would have made it hard to tell. I'm posting this mainly to vent because its incredibly frustrating, and if anybody else happens to have experienced something similar, feedback is welcome, of course.

So, these whole 13 months I haven't been able to go more than maybe 3 weeks without this happening. I get these "spells" and given my experience with opiates, withdrawal seems the best to compare the physicality of it to (I know it's not withdrawal. I'm stable on 16mg suboxone, down from 24mg a couple months ago and the times it's not acting up are great). Anyways, I get bad pain and restlessness in my legs and back, hot flashes and cold sweats, the yawning and watery eyes sometimes. I get this weird feeling in my brain, like a "not all there" feeling and, don't know how to describe it, frustrated in my brain, feeling. The pain and feeling in the head is the biggest, most consistent of these. Then there is the ever-present tiredness. This never goes away. No matter how much sleep I get. I can drink coffee or energy drink after full nights rest and still can't keep my eyes open or keep from nodding unless I'm active. If I sit down, it's not long before it hits me like a brick wall. Aside from the tiredness which is 24/7, the other stuff can come out of nowhere, together, and last anywhere from one day to one week. It's hell. It's so hard to get motivated or to go anywhere or do anything. I think it was around before I got clean, but drug use hid the issues. I know before my first use, I had tiredness issues. I used to fall asleep in every class every day basically, but I got up very early, earlier than normal, so figured that was it.

No insurance, but my sub doctor is great and will talk to me about these things since I can't afford my family doctor in addition to him. I told him about the withdrawal like feelings in past, but he forgot I guess. Recently talked about tiredness. He thinks sleep apnea. I know I don't snore at all, but I guess it could be central or something. He had me do a home sleep study which I should find results of on Friday when I see him. Going to talk about other stuff again too. I also had a scare a month ago, during a final exam for Geography class, out if nowhere, my vision went completely blurred and I got very lightheaded. Was scary. Lasted only a few minutes. Later that evening it happened again but lost hearing fir few minutes in right ear instead of blurred vision, got dizzy and disoriented. Doc thinks it was migraines, which could be. I haven't had that happen any more exactly, but more mild feelings of similar type once and a while.

The "spell" started up again last night and is still going. Pain and all. I'm hoping it goes away by tomorrow at least. I'm not even really worried about it being something serious at this point. I'm more worried that I'll never get it figured out and have to deal with this feeling for years to come. I know that was a really long post. Sorry for the excessive length, if you see it as such. There's more to it but I can't focus on it anymore right now. I'm falling asleep as I try to finish this. Anyway, thanks for letting me rant and vent. Hopefully Friday holds some answers. Goodnight all and have a great day tomorrow!
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Unread 08-30-2013, 11:18 AM   #2
NancyB
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Hi Chazwick, congrats on 13 months! That's fabulous. I'm sorry to hear about those spells. Did you get your sleep tests back yet and did you find anything out? Did he do a full blood work up on you? Since you don't have insurance, here's a link with free/low-cost clinics:
http://www.needymeds.org/free_clinics.taf
Maybe there's one near you that can do bloodwork, etc., if your doctor hasn't.

If you don't have sleep apnea, I wonder if your dose could still be a little too high. The extreme tiredness is generally a sign that a reduction could be made. But then you have those other symptoms which sound like withdrawals. So that doesn't quite make sense. I just hope you can get to the bottom of it.

Keep us posted when you can.

Nancy
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Important disclaimer: Any information in this post is not and does not constitute medical advice under any circumstances. Addiction Survivors, Inc. does not warranty or guarantee the accurateness, completeness, adequacy or currency of the information contained in or linked to the Site. Your use of information on the Site or materials linked to the Site is entirely at your own risk. NEVER take any online advice over that of a qualified healthcare provider. Any information contained on AddictionSurvivors.org should only serve to inspire further investigation with credible, verifiable references sources such as your physician or therapist.
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Unread 09-01-2013, 12:35 AM   #3
Chazwick
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Hey Nancy! Thanks a lot. I'll give that link a look in the morning! The doc said he expected to see signs of idiopathic hypersomina, I think, but it suggest a slight degree of obstructive sleep apnea. I used an app for three weeks and recorded myself sleeping. Didn't snore once but could kind of hear me trying to breath once or twice. He said its still hard to tell with the home sleep study though. He was the head of the sleep lab of the company that owns his practice, so I was also supposed to get like a $1900 dollar discount on a multiple sleep latency test, but they closed down yesterday for good so his associate who is no longer on sleep lab payroll is being very kind and trying to get me set up with a CPAP on the cheap. I'm very lucky and grateful to have found such a helpful doc. Very willing to help me out. The idea is that if the CPAP makes a difference then it must be apnea I guess. The way the tiredness hits me makes me wonder though. It just slams into me, so to speak, though there is some degree of it all day. It doesn't seem consistent with too high a dose though because I was on 24mg for maybe ten months before I reduced to 16mg. And the tiredness is worse on the lower dose. I don't mean that they are at all correlated, it didn't get worse when I reduced, but even after reducing, it continued to get worse. I'm anxious to see if the CPAP helps but I am 26 and HATE the idea of using one of those so young and for the rest of my life. That's probably just unnecessary stigma I am placing on it myself, I'm sure. If it helps though, I'll do it. I mean, I can't even begin to imagine what a day would be like without nodding off every time I sit down or stop moving. All I can do is hope something works and be grateful that I have such a fantastic and supportive doctor and for the fact that I'm not using. Thanks, as always, for your help and support Nancy. I don't visit this forum enough lately but you're all just swell!
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Unread 09-01-2013, 07:31 AM   #4
NancyB
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Hi Chazwick, I would imagine it's a little harder to tell with the home study rather than the expensive in-clinic study. But that's great that you'll be able to get set up with a cheap CPAP just to see if it helps. Have you ever tried those Breathe Right things you see advertised on the tv?
http://www.breatheright.com/
Supposedly they help. There's a 'free sample' link on the homepage, maybe give it a try just to see?

You have such conflicting things going on with too high of a dose, but I figured I'd throw it out there, just in case it was worth a try. Has your doctor checked your blood levels for iron, testosterone, Vitamin D and the rest? Tiredness is one of the symptoms of low testosterone and opioids can lower the testosterone levels.
http://www.mayoclinic.com/health/mal...CTION=symptoms

Hypogonadism can also cause mental and emotional changes. As testosterone decreases, some men may experience symptoms similar to those of menopause in women. These may include:

Fatigue
Decreased sex drive
Difficulty concentrating
Hot flashes


http://www.mayoclinic.com/health/mal...SECTION=causes
Medications. The use of certain drugs, such as opiate pain medications and some hormones, can affect testosterone production.

There have been men in their 20s who had have low testosterone from opioids, so it's not unusual. Just something else I thought of to consider.

I hope that they find out what's going on so that you start feeling so much better!!

Keep us posted!

Nancy
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Important disclaimer: Any information in this post is not and does not constitute medical advice under any circumstances. Addiction Survivors, Inc. does not warranty or guarantee the accurateness, completeness, adequacy or currency of the information contained in or linked to the Site. Your use of information on the Site or materials linked to the Site is entirely at your own risk. NEVER take any online advice over that of a qualified healthcare provider. Any information contained on AddictionSurvivors.org should only serve to inspire further investigation with credible, verifiable references sources such as your physician or therapist.
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Unread 09-01-2013, 01:04 PM   #5
Chazwick
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Thanks. Just what I need, hypogonadism. Lol. I'd rather have apnea. But on a serious note, I haven't had any blood work lately. I do have a very thorough blood workup a year ago, in September, when I first got clean and the signs pointed to Hepatitis C. Tested positive for it. Then some other stuff showed it too. Couple months later I had the blood work, 19 tests (19 tubes of blood. Very dizzying) and they checked everything, auger, thyroid, iron, cancer indicators and everything associated with blood cells. Indicated a genetic predisposition to some iron related disease, hemochromatosis I believe, which my mom has. Forgot about that until now really. Surprisingly, despite previous positive tests, after all the blood work, the hep c was gone. The GI doc said she thinks my body beat it on its own, which is rare. She had done a qualitative PCR load in the 19 tests so after that she ran a quantitative one and it showed the same. It was gone. I've wondered if it was possible it was just at such low levels at the time, below a threshold. I don't know. And of course I know these test were a year ago so my iron and other levels could have changed since. Still some more work to be done but I'm confident it'll get figured out eventually. I'm not in one of those spells right now so I can be optimistic about it. Thanks for allowing me a place to vent.
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Unread 09-02-2013, 05:43 AM   #6
theswan
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Look carefully at the things noted. The dose may be too high and coupled with even mild OSA, can be a major contributer to your concerns. Low T also is part and parcel of all that is going on.
I just had my sleep lab and it seems I have OSA bad

My pain doctor told me to not take the bupe late because it effects breathing.

Take care of the T levels if you can, lower the dose as you are able to and address the OSA and I'd bet you will feel a whole lot better.

Glen
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Unread 10-21-2013, 10:11 AM   #7
Chazwick
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Thanks for the reply. It seems I haven't been in herein awhile. I really don't think it is the dose, which I have been stable in for months now after my last reduction from 24 to 16mg. I've been on too high a dose in past attempts and there's a difference in the tiredness and overall feeling. However I am likely reducing a bit here soon. That's the plan anyway. I do think the OSA is possible. Or CSA. Don't remember if I mentioned before, but my home sleep study indicated apnea. The doctor thinks obstructive, though I recorded myself for a month almost and had maybe one single snore the whole time. Maybe two, but I'm not a snorer. Of course, I'm also not a doctor and OSA may be entirely possible without snoring. I trust my doctor, at least. He's heard of the sleep lab, or was, but they closed. Th guy under him there who hooked me up in the home study is supposed to be getting me a deal in a CPAP that automatically determins the right adjustments, to borrow, and once we know what to set it to, he should be getting me a cheaper one, this way I don't have to pay for techs and all that. He was laid off in the lab closure, so he's just doing my doc and I a favor, but it's been like two months, and I've not heard much else. I see the doc on Friday, so hopefully I'll know more after that visit.
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Unread 11-12-2013, 04:00 AM   #8
MattC42286
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Hi chazwick keep us all posted and know that we are praying for you!!!
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