My pharma diary

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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Re: My pharma diary

Postby ViewsAskew » Sun Feb 26, 2017 5:19 am

Increasing my vit D was very helpful. Mine was 5, IIRC. I was very depressed, too, when it was that low.
Ann - Take what you need, leave the rest

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legsbestill
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Re: My pharma diary

Postby legsbestill » Sun Feb 26, 2017 7:42 pm

Hopefully improving the vit D situation will have a beneficial outcome all round. It would be very interesting to hear how things continue for you. Interestingly, I got very low during the last week - it all felt hopeless and miserable and I couldn't really account for it as hadn't had dramatic change of meds or other lifestyle factors. Mood lifted greatly yesterday and I am just thinking that I found my bottle of Vit D tablets on Friday and started taking them again.

badnights
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Re: My pharma diary

Postby badnights » Fri Mar 03, 2017 3:51 am

I've been taking 3000-4000 IU D daily for a quite a few years now. When I first started, I unintentionally stopped or reduced twice, and both times my symptoms (at first) stayed at the same level so I figured I didn't need D - but that was only for 2 or 3 weeks, then my symptoms began to increase in severity. I finally realized it might be the D after all, re-instated it, and didn't notice any improvement for 2-3 weeks, after which things improved. This happened both time.

My conclusions from the unintended experiment were that it takes a while for vitamin D to build up or deplete enough to have an effect, but it does have an effect.

I have done the same thing with iron. Form me, it makes its absence or presence felt within two or three days.
Beth - Wishing you all restful sleep tonight
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QyX
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Re: My pharma diary

Postby QyX » Wed Mar 15, 2017 5:01 pm

So taking Vitamine D was a game changer. I feel so much better now. Especially oversleeping the day and all this tiredness has gone away. This makes me very happy since quality of life has improved dramatically. Also the whole way I feel is much better now. Less anxiety and less tension.

For the RLS, it is better now then it was in February. I mix opioids 2/3 Morphine and 1/3 Oxycodone. This seems to do it. Neither Oxycodone or Morphine alone seems to work but since I started mixing it together I am almost symptoms free again.

Polar Bear
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Re: My pharma diary

Postby Polar Bear » Wed Mar 15, 2017 6:02 pm

QyX you sound so much better today, I hope this adjustment lasts well for you.
Betty
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badnights
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Re: My pharma diary

Postby badnights » Thu Mar 16, 2017 7:06 am

How long did it take for you to notice it?
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QyX
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Re: My pharma diary

Postby QyX » Fri Mar 17, 2017 12:54 am

badnights wrote:How long did it take for you to notice it?


I had first effects after 4 days or at least I think I did. Some days later there was a setback and I doubted the improvements had anything to do with Vitamine D but after two weeks of supplementing I consider the situation stable.

When I was younger I always loved playing computer games, shooter and especially racing games. It was no fun to play video games in the past 3-4 years. I thought I finally grown up or so but I always felt some interest underneath but no energy, no motivation.

Since I take Vitamine D it all changed. It is fun again and I bought a wheel and pedals to play racing games.

And there are many other little areas where my life improved. For example talking to people became easier with less anxiety and more energy. And for sure I look better, more awake and focused.

In the end this all adds up so that I can say that my qualify of life has significantly improved.

badnights
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Re: My pharma diary

Postby badnights » Fri Mar 17, 2017 7:49 am

That sounds a lot like Ann's experience. Interesting to know it can take effect fairly quickly. Thanks.
Beth - Wishing you all restful sleep tonight
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legsbestill
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Re: My pharma diary

Postby legsbestill » Fri Mar 17, 2017 11:59 am

That's great news QyX

QyX
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Re: My pharma diary

Postby QyX » Fri Aug 31, 2018 8:13 pm

Okay, after a long time some news from me again:

Vitamin D wasn't the game changer I hoped it to be.

Things went on for a while but then I ran into serious sleeping problems again, so much that I was forced to take a break from university again. I was depressed and could not really figure out what the issue was. Everything just became chaotic - again - and I lost control about my life once more.

Only 2 weeks ago I figured out that the high dose of Carbamazepin I was taking (about 3.000 mg) had become a problem.

To break things down a bit: I started Carbamazepin because of the insomnia. It was a desperate move by myself some years ago when I still had many tablets left who were prescribed for some other reasons.

Opioids work fine for the physical symptoms but they can't do sh*t for the insomnia and (hyper)alertness themself.

Carbamazepin worked as a mild sleeping pill and it also helped with keeping my opioid dose low and stable. But in the past years my Carbamazepine dose was increasing and increasing and increasing. And only now I realised that at that high dose Carbamazepine is causing insomina, alertness and RLS symptoms itself since I was running into opioid tolerance issues and found no way to reduce the dose. It was only going up and up and up.

I've tried to reduce Carbamazepin in the past months since I was aware that some kind of tolerance problem is going on ... but reducing the dosage only made things worse. I was stuck and had no way to go at that point. Also my doctor is not really helpful in these kind of situations not very willing to experiment. She wants to refer me to "specialists" who in the end don't know more either.

Anyway, I ran into some problems with my shoulder. I woke up and had severe muscle tension / pain in my shoulder and no matter how I tried to lay in the bed, it hurted so much that I was only able to sit. In my desperation I tried Benzodiazepines who haven't worked for me in years, basically since I started taking Carbamazepine ... but uhhhh .... now they worked again.

Every 4-5 months I tried if Benzos work again ... because if they would ... sometimes they can be mega helpful with RLS ... but always no luck.

Now I used Benzodiazepines (first Clonazepam, no Diazepam to have an easy withdraw) to reduce my Carbamazepine dose from about 3.000 back to 400 to 600 (I think initially I started at 800 and went up high fast). I hoped that it may be possible to do a complete Carbamazepine withdraw but even with Benzos, I ran into such severe insomnia ... that I would have had to stay on high doses of high potent Benzos for months to get that done .... and this is really not something I wanna do without supervision ... especially since I am only using the Benzos I have left from older prescription from a different doctor.

Reducing the Carbamazepine under Benzos also allowed me to reduce my opioid dosage by about 40% .... but we have to see how things are once I am done with withdrawing from Benzos ... (I am at 9 mg of Diazepam and reducing the dosage by 1 mg per day and since I only took Benzos for about 3 weeks now ... it is easy going).

And then we have to see how my doctor reacts. She wanted me to take less opioids and never was happy with my high Carbamazepine dose ... but we never spoke about Benzos ... so I have no clue what she thinks about them. It is always a bit of a thing when you mix opiods with Benzos and she seems to be scared easily ... but I felt I had no choice ... so will see ....

QyX
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Re: My pharma diary

Postby QyX » Wed Sep 19, 2018 12:07 pm

Okay, I am just home from my appointment with my neurologist.

1st I told her of my use of Benzodiazepines, especially Clonazepam but I didn't mention exactly how much I took but was accurate how long I took them and how I took them in the past days. She did not comment on my use exactly but she kinda realised that I was in a position where I had not much of a choice.

Anyway, I got her to prescribe Oxcarbazepine instead of Carbamazepine. However since Oxcarbazepine is only approved for epilepsy I have to pay it for myself. When it turns out it will work, I might have a chance to get the insurance to pay for it but until then it is about 2 EUR / day for Oxcarbazepine alone ... which sucks. I understand that she also has to protect herself and can't take a big risk with my insurance but also many many doctors in Germany would not hesitate to prescribe via insurance in such a severe case where all approved drugs have already been tried over and over again.

So I am not happy that I had to pay 100 EUR for Oxcarbazepine without even knowing if it will work or not.

And yay, she also prescribed Diazepam 5 mg (20 pills) ... acknowledging that I have some kind of "benzo situation" and that I have to do minor withdraw for 7 to 12 days to keep my GABAnergic system balanced. In the past weeks, after the Carbamazepine reduction from over 3000 mg to now 800 mg with the help of Clonazepam, I was on and off on benzos, taking them for maybe 3-4 days per week, mostly short acting stuff like Bromazepam and Alprazolam. I mostly was able to sleep on the days without benzos but only during day and even with benzos it was mostly impossible to sleep during night.

I also could sense that I was developing a fast tolerance during the hypnotic and sedative properties of Benzodiazepines. And when you use high potent Benzodiazepines like Clonazepam, Alprazolam etc. and you are not willing to increase the dose because of the fear of physical dependence, benzos can be come almost useless fast.

So for last night day I had to take an equivalent doses of almost 40 mg Diazepam, so that I was able to sleep during the night and make the appointment in the morning. I mixed intermediate, long acting Benzos in the evening to avoid sedation in the morning and after I woke up several times late at night and had trouble going fall back to sleep again, I also added super short acting high potent benzo hypnotics (Brotizolam), just to force my brain to sleep one night.

For whatever reason the sleep quality didn't felt that bad, even though it was 100% benzo induced ... and fun fact ... I was almost 24 hours awake before I finally fell to sleep and even with all the Benzos, it took almost 3 hours until I finally slept.

So while I understand that there is some tolerance involved, a dose like this never should have been necessary. It is just stupid and shows how broken and damaged my brain is. That my doctor was willing to seriously consider and prescribe my Benzodiazepines is a rare thing today. Everybody is so scared to prescribe Benzodiazepines to younger patients because everybody fears they will be addicted after one pill and will only want more and more and more. And for those of us who treat these drugs as responsible as they can, we suffer from this.

But I admit, Benzodiazepines got heavily be over prescribed in the 70s, 80s and early 90s in Germany. They took so many initiatives to reduce benzo prescriptions that you need to have established trustworthy relation to your doctor to get some, if you need them. She is prescribing my opioids since the past 4 years and I think because I established myself in being trustworthy and responsible, she was willing to prescribe Benzodiazepines in rather low dose and small amount. But okay, much better then nothing and I still have a huge stockpile with other Benzos from my old doctor who was prescribing them like M&Ms after he found out I have RLS and all other treatment options don't work ... and he told me better to be addicted then not sleep at all. I had a disagreement with him because he did not understand that getting benzos is great and all but when the sleep quality is poor and only gets worse, then benzos are no big help and at that point I already got opioids from him. But he said he sees no other options (and we literally tried every recommended drug ... Carbamazepine was only a wild guess from me. It worked for several years but now here we go ... BENZOS AGAIN ... and in the past they sooner or later only lead to disaster .... but only because nothing else was working).

I will also try Ferritin infusion but my own doctor is not doing it. So I have to look for doctors in town who are doing it and I am not sure if there are any. So getting Ferritin might end being complicated but when I respond to Oxcarbazepine, I would have lots of time to find one and eben could look for doctors outside town.

In addition I will investigate Nicotine for RLS after I read this one report from a person in another subsection of this forum. He spoke about nicotine mints but I bought a simply vaporizer for nicotine because I believe dosing is easier when I vaporise nicotine (and it will act much much faster).

There is something really interesting about nicotine. Here in Berlin I don't smoke, drink alcohol and try my best to life as healthy as possible. But when I travel home for chrismas and birhdays, I smoke and drink like many of my relatives ... and oh surprise, I have no trouble sleeping at all. I also remembered that when I stopped nicotine, I had much more trouble sleeping then before, even months and years after I stopped nicotine.

When I am home and I wake up during night, I always go for a smoke and even me being crazy awake, the cigarette kinda puts me down again and after 10-20 minutes I was able to sleep again. But okay, back then Carbamazepine was also having a much stronger effect then now.

I would be happy to get some feedback on this. I guess what I do is just what we all do. Trial and error and hope for the best.

stjohnh
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Re: My pharma diary

Postby stjohnh » Wed Sep 19, 2018 2:33 pm

QyX wrote:I will also try Ferritin infusion but my own doctor is not doing it. So I have to look for doctors in town who are doing it and I am not sure if there are any. So getting Ferritin might end being complicated but when I respond to Oxcarbazepine, I would have lots of time to find one and eben could look for doctors outside town.
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So I am not happy that I had to pay 100 EUR for Oxcarbazepine without even knowing if it will work or not.
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I would be happy to get some feedback on this. I guess what I do is just what we all do. Trial and error and hope for the best.


I don't understand what you mean by Ferritin infusion. I think you mean what we in the US call IV iron infusion. Ferritin is a storage protein for iron. I STRONGLY urge you to try it.

QyX, I don't recall if you have tried THC. It is now available without prescription in many parts of the US. Additionally, pharmaceutical grade THC is available by prescription for certain seizure disorders. Is it available in Germany? It doesn't seem to help the urge to move symptoms of RLS much, but DOES improve sleep a lot.

About spending a lot for a med that you don't know will work: In the US if a patient has a prescription for 100 tablets and goes to the pharmacy, he can request any amount up to the 100 tablets, making it possible to get just a few tablets if they are expensive and there is some question how well the drug will work. Do German regulations allow that?

I also don't recall you trying dipyridamole. It doesn't help my urge to move, or directly improve sleep, but has improved my quality of life in that I have much more daytime energy and feel much closer to normal. It is a big effect for me. The published literature is currently very limited. It did help people with mild RLS a lot in the very small study, but there is good theoretical evidence that adenosine abnormalities are part of the RLS symptom complex. Dipyridamole increases extracellular adenosine.
Blessings,
Holland

QyX
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Re: My pharma diary

Postby QyX » Wed Sep 19, 2018 3:24 pm

Sorry, I mean iron infusion therapy but it is not very common in Germany, yet.

Never heard of any patient in hole Europe getting IV iron infusion.

In terms of Cannabis, I guess in my case I could get a prescription. But not from my own doctor. I would need to see a doctor who has a special expertise and believes in Cannabis in general.

Of courses I tried Cannabis many times when I was younger. Especially between 16 and 19 it helped a lot with sleeping but it also takes away my energy the next day, reduces my intellectual capabilities by A LOT after using it for a few weeks.


German regulations for pharmacies are different and it depends if your medication is paid by insurance or if you pay for it by yourself.

I read about dipyridamole. It is not available as a solo medication in Germany, only in combination with Aspirin.

Right now I dont have a doctor who simply would just prescribe what I want.

But yes, getting IV iron infusion treatment would be my next course of action.

badnights
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Re: My pharma diary

Postby badnights » Wed Sep 26, 2018 4:43 pm

QyX, don't forget you will probably be able to go back on Carbamazepine in a while. You should be able to keep some kind of rotation going to avoid tolerance.

Re
So getting Ferritin might end being complicated but when I respond to Oxcarbazepine, I would have lots of time to find one and eben could look for doctors outside town.
Doesn't that just suck! Being unable to function, unable to do simple things. Even now that I'm so much better than I was, I still can get overwhelmed, I don't have enough energy to deal with things, and I'm amazed at "normal" people because it seems like they can do so much.

I hope you can get an iron infusion. My doctor doesn't see the need because my ferritin is over 100, but I told her I could stop taking iron pills and it would be under 100 in a month or two, then I would qualify??! I also just asked her about dipyridamole, and she might be thinking about it but she was kind of negative due to the blood thinning and my lifestyle of sports that can get me knocked about.

I'm in Oregon on a trip, marijuana is legal here, so I tried a water-based tincture (water for fast acting) of 1:1 THC:CBD (on the advice of the dispensary). The two times I tried it, I slept well without using my usual zopiclone. I took about 7 mg just before bed, then another 7 when I woke up in the night. Since it's being made legal in Canada next month, I am hopeful that I can stop taking zopiclone entirely. I hope!!
Beth - Wishing you all restful sleep tonight
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Rustsmith
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Re: My pharma diary

Postby Rustsmith » Wed Sep 26, 2018 4:54 pm

Another marijuana convert :D

Glad you got to experiment ahead of legalization in Canada and also glad that you will be able to continue your experiment after you get home.
Steve

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