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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 20 of 20. This is the beginning of the thread.
Posted by plenair on December 1, 2018, at 9:16:21
Hi,
I am sensitive to most medications. I have anxiety and ocd. I haven't had relief with many drugs including but not limited to benzos,beta-blockers, alpha blockers, gabapentin and SSRIs. These drugs have all caused many side effects, some of which I can live with. No drug has had good efficacy for my problems. However, I cannot tolerate certain side effects. SSRI's cause certain intolerable side effects including urinary hesitancy, bladder pain and ringing in my ears. I have been reluctant to try SNRIs, TCAs or AAPs due to my extreme sensitivity to medications, which are acknowledged by my doctors.
Can any serotonergic agent help? Any opinions on what a very sensitive person can take? Thanks.
Posted by linkadge on December 1, 2018, at 14:49:09
In reply to Intolerant to many medications...opinons?, posted by plenair on December 1, 2018, at 9:16:21
I found the TCAs more tolerable than the SSRIs. Clomipramine is considered the gold standard for OCD. Might be worth a shot.
Linkadge
Posted by plenair on December 2, 2018, at 0:02:36
In reply to Re: Intolerant to many medications...opinons?, posted by linkadge on December 1, 2018, at 14:49:09
Thanks, Linkadge.
My pdoc actually wants me to try Clomipramine next or do a prolonged increase of Fluvoxamine (Fluvoxamine caused the urinary issues and tinnitus at only 50 - 75mg range).
I have been afraid to try clomipramine. I understand that it may have caridac side effects?
Posted by linkadge on December 2, 2018, at 17:33:51
In reply to Re: Intolerant to many medications...opinons?, posted by plenair on December 2, 2018, at 0:02:36
If you are sensitive, always request the lowest incremental dose and then split this in half or quarters.
The urinary hesitancy often improves over time, as receptors adjust to alterations. Bethanechol can be used to improve this, if it does not go away.
Magnesium might help tinnitus.
If you can't get up to a full theraputic dose, just take the dose you can. For example, 25-50mg of clomipramine might be all you can tollerate, and it may provide some relief. You might be able to augment it with something else.
Linkadge
Posted by plenair on December 2, 2018, at 23:47:24
In reply to Re: Intolerant to many medications...opinons?, posted by linkadge on December 2, 2018, at 17:33:51
Linkadge, thank you for this.
My pdoc did suggest going even more slowly with fluvoxamine. I stayed at 25mg for a week, then 50mg for five days, then 75mg for about two weeks, then 100mg for a night before I had to come off it due to the urinary hesitancy and the tinnitus. I then tapered back through 50mg and 25mg for two weeks coming off. The urinary hesitancy cleared up but not the tinnitus.
If there's any efficacy to staying at 25mg, and 50mg for a really protracted period of time before climbing back to the 75mg trouble dose, perhaps I should go that route?
Posted by linkadge on December 6, 2018, at 16:16:13
In reply to Re: Intolerant to many medications...opinons?, posted by plenair on December 2, 2018, at 23:47:24
Hmm. Difficult to say. Some people who are sensitive to side effects are also sensitive to lower doses (therapeutically).
With a month or two of use, you may find that certain side effects abate. If you are finding any therapeutic effect, you may ask for other medications to help mitigate side effects (even if in the short term).
Linkadge
Posted by plenair on December 11, 2018, at 5:59:37
In reply to Re: Intolerant to many medications...opinons?, posted by linkadge on December 6, 2018, at 16:16:13
Regarding splitting the doses in halves or quarters - for luvox, the smallest pills are unscored 25mg pills. I assume those can't or should not be split.
I'm off the luvox and the urination improved. The tinnitus remains, but it's lower. I take a high dose of magnesium already - thanks for the suggestion.
I don't know whether to reinstate luvox or try something else. My anxiety/ocd is causing severe insomnia.
As for other medications to mitigate side effects of the primary medication, I would like to see a therapeutic effect first before doing these. Sadly, I've yet to experience a prominent therapeutic effect from any of these drugs.
Posted by linkadge on December 14, 2018, at 18:54:44
In reply to Re: Intolerant to many medications...opinons?, posted by plenair on December 11, 2018, at 5:59:37
The only medications that you (really) can't split are those that are time release (or perhaps coated to protect the stomach).
There's no real issue with splitting Luvox. The medication could release a bit faster, but otherwise it should work the same.
If you have high anxiety, you might try a non-ocd medication like say, pregabalin. It may also help OCD.
Linkadge
Posted by bleauberry on December 17, 2018, at 14:42:08
In reply to Intolerant to many medications...opinons?, posted by plenair on December 1, 2018, at 9:16:21
In my experience being intolerant or overly sensitive to a variety of meds is a damn good clue you're dealing with a stealth infection of some kind. Lyme is most common, but there are at least a dozen other common ones. They love the brain. You could also have yeast overgrowth in the gut that allows undigested particles of meds and foods directly into the bloodstream and that causes a host of immune system responses that present themselves as being overly sensitive or allergic.
The sensitive thing is a great clue. You need to keep doing what you and your doctor agree on psychiatrically, but you also need to study and work on stealth infection knowledge. That could be where your symptoms - all of them - originated from.
Posted by plenair on December 22, 2018, at 0:50:24
In reply to Re: Intolerant to many medications...opinons? » plenair, posted by linkadge on December 14, 2018, at 18:54:44
Isn't pregablin/lyrica similar to gabapentin chemically? I tried gabapentin last year and also had urinary retention at a very low dose, so I stopped.
Regarding pill-splitting - if the pill has no score-line wouldn't splitting the pill not result in an even distribution of medicine?
Thanks for your message.
Posted by plenair on December 22, 2018, at 0:58:39
In reply to Re: Intolerant to many medications...opinons?, posted by bleauberry on December 17, 2018, at 14:42:08
Thanks for your message. I appear to have been sensitive to substances and environmental conditions since childhood.
I had a devastating reaction to a fluoroquinolone antibiotic that has left me with bodywide neuropathy and a weakened musculoskeletal system that I've been dealing with for years. The effects are painful and appear permanent My doctor did think that I might have "leaky gut" which may have contributed to the toxic reaction. I've been on all sorts of extreme diets to help these issues. I had my stool tested for stuff. I'm still messed up. I can't say it's because of leaky gut, but who knows.
Posted by bleauberry on December 27, 2018, at 11:10:03
In reply to Re: Intolerant to many medications...opinons?, posted by plenair on December 22, 2018, at 0:58:39
Your story reminds all of us how complex things are. It's not as simple as low serotonin or whatever.
Quninolone ABX are indeed harsh - I was on it for about 3 months - it worked amazing - but also caused serious issues with hairline fractures of bones without any trauma. That improved after getting off it.
The bad reaction you had actually sounds more like a vicious full-blown Herxheimer reaction to me than it does a direct effect of the drug itself. And that the permanent damage was from the intense inflammation, not the drug. As you have noted, it is hard to tell.
Leaky gut is certainly a thing that causes many problems and I think docs don't have much training on that. It's usually caused by poor food choices and/or stealth yeast infections. Testing isn't very good. We just have to stick to the basics - low sugar, organic, non-gmo, low carb, glutamine supplements, digestive enzymes with meals, and DGL...a modified version of licorice.
You might want to experiment with some of the common Lyme herbs just to see what happens. The reactions you might have - good or bad - can offer a lot of new clues to figure things out.
I'm thinking specifically of Andrographis, Cat's Claw, Resveratrol (from polygonum cupsidatum, not from grapes).
Some things seem universally helpful. One of them for me has been Berberine - I get it in a supplement called Phyto-Biotic. Another is Curcumin. Another is Rhodiola Rosea. I'm sensitive still so my doses are on the low side - Rhodiola is only 100mg but most people take upwards of 400mg.
Overall, just based on what you have written, I would have no problem saying, "it looks like long-term lyme to me". That's why I think sampling some of those herbs might be a way to go, because they will either rule it in or rule it out. If you take those herbs and not much happens, then you can probably rule it out. If you take those herbs and you feel a little better right away but then lot worse in a few days, that rules it in. If you crash hard, that definitely rules it in...more accurate than the lab testing.
> Thanks for your message. I appear to have been sensitive to substances and environmental conditions since childhood.
>
> I had a devastating reaction to a fluoroquinolone antibiotic that has left me with bodywide neuropathy and a weakened musculoskeletal system that I've been dealing with for years. The effects are painful and appear permanent My doctor did think that I might have "leaky gut" which may have contributed to the toxic reaction. I've been on all sorts of extreme diets to help these issues. I had my stool tested for stuff. I'm still messed up. I can't say it's because of leaky gut, but who knows.
Posted by plenair on February 17, 2019, at 8:45:54
In reply to Re: Intolerant to many medications...opinons?, posted by bleauberry on December 27, 2018, at 11:10:03
Hi,
Thanks for your reply. Just wanted to get back to you Bleuberry. The reaction that I had to Levaquin wasn't a Herxheimer reaction. Fluoroquinolones and Levaquin are documented in their direct toxicity to nerves and tendon tissue. They carry blackbox warnings for these effects, and there have been class-action lawsuits. The more global problems caused by Fluoroquinolones that result in life-altering permanent disability is not as well publicized but is all too real. Thousands of people have been injured by fluoroquinolone toxicity. Many more likely have low-grade injuries from these drugs that they may never associate with taking the medication. Multiple rounds of fluoroquinlones appear to increase the chance that a catastrophic reaction will occur as well as some as yet undefined sensitivity to the drug and unknown environmental factors. There are multiple articles on PubMed that document the research into the toxicity of this class of drug.
I agree that it may be conservative to try the herbs you mention.
Thanks again for taking the time to reply.
Posted by plenair on February 17, 2019, at 8:51:40
In reply to Re: Intolerant to many medications...opinons? » plenair, posted by linkadge on December 14, 2018, at 18:54:44
Question regarding pregablin -
I also experienced urinary retention when I took Gabapentin. Isn't pregablin just a stronger version of that drug?
I really need to help my high anxiety and OCD. It is causing me severe insomnia and my indecision is high.
My pDoc endorses trying low-dose Luvox for a while - I guess at 25mg to see if I can get over the side effects of urinary retention and tinntus. He also endorses clomipramine - but I am concerned it will have the same urinary and tinnitus effects that I've gotten from several classes of drug.
What about Remeron/Mirtazipine? I see it may not have anticholinergic effects.
Thanks.
Posted by SLS on February 17, 2019, at 10:49:59
In reply to Intolerant to many medications...opinons?, posted by plenair on December 1, 2018, at 9:16:21
> Hi,
>
> I am sensitive to most medications. I have anxiety and ocd. I haven't had relief with many drugs including but not limited to benzos,beta-blockers, alpha blockers, gabapentin and SSRIs. These drugs have all caused many side effects, some of which I can live with. No drug has had good efficacy for my problems. However, I cannot tolerate certain side effects. SSRI's cause certain intolerable side effects including urinary hesitancy, bladder pain and ringing in my ears. I have been reluctant to try SNRIs, TCAs or AAPs due to my extreme sensitivity to medications, which are acknowledged by my doctors.
>
> Can any serotonergic agent help? Any opinions on what a very sensitive person can take? Thanks.I would be interested to know how you reacted to Prozac (fluoxetine) and at what dosage?
Paxil (paroxetine)?
Calling Lyrica (pregabalin) as being little more than a stronger Neurontin (gabapentin) when treating anxiety disorders (of which OCD is one) might neglect pharmacologic effects other than blocking the alpha-2-delta subunit of the calcium channel. It would be great to know if there are any. Having taken both drugs, I found that Lyrica initially produced an effect that reminded me of alcohol intoxication. Neurontin did not do this. I don't know if this proves anything, but that was my experience.
Clomipramine (Anafranil) is a strong anticholinergic. Many people can't tolerate it, but it might be worthwhile to test the drug to see how it affects you. For now, it is usually considered to be the most powerful anti-obsessionals available. You can always stop taking it if you are unhappy with it. In the worst of cases, some doctors combine clomipramine with a SSRI.
Was there ever a time when you were not sensitive to medication? What do you experience as sensitivity? What treatment has worked best so far? Why did you discontinue it?
Both Lyrica and Neurontin produced in me severe cognitive impairments and a scary, unrelenting brain fog that lasted for many weeks after I discontinued the offending drug.
- Scott
Posted by plenair on March 3, 2019, at 6:27:59
In reply to Re: Intolerant to many medications...opinons?, posted by SLS on February 17, 2019, at 10:49:59
Hi Scott,
Thanks for your reply.
The trial I took of Prozac was very short and likely inadequate. It was five days at 5mg. I was very jittery on it with a feeling like I was jumping out of my skin. I admit that this could just be my anxiety, which at the time was very high.
I have not tried paxil.
There has never been a time when I was not sensitive to medication. I experience wide-ranging physical side effects:
Of the SSRIs, I have tried Citalopram for about six months and Luvox for a month. The citalopram (I worked up to 60mg) caused wieght gain, impotence, vision problems, headaches and ringing in my ears. It did not help my anxiety/OCD.
The Luvox caused urinary retention and ringing in my ears even at 50mg, maybe 25mg, I think.
Gabapentin at 100mg caused terrible urinary retention. I have this theory that I am sensitive to anticholinergic agents.
Alpha blockers caused headaches and dry eyes and mouth.
Beta-blockers caused discomfort in my lungs.
I took Valium, escalating to a dose of 30mg for about 3 - 4 years. It didn't help my anxiety unless I took it all in one shot , and I suspect that it contributed to my massive insomnia problem.
Buspirone gave me terrible brain zaps and headaches.
Medical marijuana caused chest tightness, anxiety, and head pressure.
None of these medications helped with my OCD, anxiety or insomnia.
I have yet to find any treatment to help my problems.
I asked my psychiatrist for mirtazipine which he gave me. My reasoning is that it appears to have weak anticholinergic properties and sedating effects so I thought it could help with OCD, anxiety and my insomnia with a lower chance of urinary issues or increasing tinnitus. My insomnia is off the charts bad. Predictably, I've been afraid to take mirtazipine even at 7.5mg and I have not started it. I would even prefer to start lower, but I dont think the pill can be cut into quarters.
I'm sorry about your experience with Lyrica/gabapentin.
Sorry for the late reply. Thanks for any further suggestions.
Posted by SLS on March 5, 2019, at 20:25:31
In reply to Re: Intolerant to many medications...opinons?, posted by plenair on March 3, 2019, at 6:27:59
Hi.
Your reactions to medication represents quite a challenge. I'm sorry that things have been so difficult for you. You are certainly resilient.
Which alpha-blockers have you tried?
Nardil?
Ketamine?
Lamictal + N-acetylcysteine?
- Scott-----------------------------------------------
> Hi Scott,
>
> Thanks for your reply.
>
> The trial I took of Prozac was very short and likely inadequate. It was five days at 5mg. I was very jittery on it with a feeling like I was jumping out of my skin. I admit that this could just be my anxiety, which at the time was very high.
>
> I have not tried paxil.
>
> There has never been a time when I was not sensitive to medication. I experience wide-ranging physical side effects:
>
> Of the SSRIs, I have tried Citalopram for about six months and Luvox for a month. The citalopram (I worked up to 60mg) caused wieght gain, impotence, vision problems, headaches and ringing in my ears. It did not help my anxiety/OCD.
>
> The Luvox caused urinary retention and ringing in my ears even at 50mg, maybe 25mg, I think.
>
> Gabapentin at 100mg caused terrible urinary retention. I have this theory that I am sensitive to anticholinergic agents.
>
> Alpha blockers caused headaches and dry eyes and mouth.
>
> Beta-blockers caused discomfort in my lungs.
>
> I took Valium, escalating to a dose of 30mg for about 3 - 4 years. It didn't help my anxiety unless I took it all in one shot , and I suspect that it contributed to my massive insomnia problem.
>
> Buspirone gave me terrible brain zaps and headaches.
>
> Medical marijuana caused chest tightness, anxiety, and head pressure.
>
> None of these medications helped with my OCD, anxiety or insomnia.
>
> I have yet to find any treatment to help my problems.
>
> I asked my psychiatrist for mirtazipine which he gave me. My reasoning is that it appears to have weak anticholinergic properties and sedating effects so I thought it could help with OCD, anxiety and my insomnia with a lower chance of urinary issues or increasing tinnitus. My insomnia is off the charts bad. Predictably, I've been afraid to take mirtazipine even at 7.5mg and I have not started it. I would even prefer to start lower, but I dont think the pill can be cut into quarters.
>
> I'm sorry about your experience with Lyrica/gabapentin.
>
> Sorry for the late reply. Thanks for any further suggestions.
>
>
>
>
>
Posted by plenair on May 22, 2019, at 20:13:58
In reply to Re: Intolerant to many medications...opinons? » plenair, posted by SLS on March 5, 2019, at 20:25:31
Hi,
I'm super-late on this. Still suffering with major anxiety/OCD/ruminations with terrible physical tension and insomnia.
As for alpha-blockers, I've only tried Prazosin - a lot of prazosin. I thought it had potential, and so did my pdoc, for anxiety from ruminations but it did nothing. I got side efects of headaches and severe dry eyes from it.
I have not tried the others you mention - nardil, ketamine, lamactil.
I have tried supplemental NAC, but didn't work up to theraputic doeses (2 grams +).
I have a script for Remeron. Deliberating on that.
Posted by Stargazer2 on June 12, 2019, at 0:45:22
In reply to Re: Intolerant to many medications...opinons?, posted by SLS on February 17, 2019, at 10:49:59
Buchal swab for generic testing to see what meds will be metabolized by your liver enzymes.
Posted by plenair on June 15, 2019, at 8:25:06
In reply to Re: Intolerant to many medications...opinons?, posted by Stargazer2 on June 12, 2019, at 0:45:22
Thanks. I've done this already. I did the psychiatric "GeneSight" test and 23andme. Genesight indicated I could take all aforementioned meds that I wound up not being able to tolerate. GO figure. What a waste of money.
I have quick activation of the fight/flight response that's causing many uncomfortable sensations and really need to lower my anxiety so I can get some sleep (wicked insomnia).
Any thoughts on Niacinamide? I'm currently stepping up on Thiamine (benfotiamine) and VItamin C to see if it can help my neuropathy - maybe it will help the anxiety?
This is the end of the thread.
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