HPPD caused from prescribed Tamiflu?

[Sunlilly]

Sorry this is so long, but thank you for taking the time to read and reply!

This is my first post and wondering if any of you have heard of long term, funky effects occurring after Tamiflu use. A bit about me: I'm 38, no drug use since early 20's, tendency towards anxiety.

I had the flu in March 2013. It was confirmed by rapid test in the doctor's office (urgent care clinic). Doc prescribed Tamiflu, 75mg twice a day for 5 days. After the first day of dosing my flu symptoms disappeared. I no longer had a fever, no more body aches, etc. the only thing that lingered was a dry cough. After the second day (4 doses total), I started having auditory hallucinations (unintelligible whisperings), paranoia (thinking I was being watched or recorded, TV characters like Spider-man appeared evil and menacing), delusional and irrational thoughts, thoughts of killing myself (mainly just thoughts of freaky things that dealt with a lot of gore), tingly, electric sensations in my brain (felt like an uncomfortable comeup on LSD). I was completely whacked out of my mind. I stopped at the 4 doses of Tamiflu and didn't sleep for the next 48 hours. After about a week, the weird crazy shit subsided but I was left with a lingering buzzing SENSATION in my head, my vision was jumpy and everything (colors) seemed brighter and magnified, geometric patterns seemed to morph, walls and floors breathed, which all sent me into full blown panic attack. I would say the worst feeling was being so disconnected from the world around me. Everything felt distant and I was unable to emotionally connect with experiences or people. My memory and recall suffered too. Something would happen earlier in the day, but it felt like it happened days ago. Also, I wasn't able to follow a conversation, focus on reading a book, or remain focused on watching a movie. Even when I tried to watch TV, certain graphic material or weird effects would send me into a panic attack.

Anyway, this all happened in March 2013. I was unable to drink my usual morning cup of coffee or have a glass of wine without feeling the Tamiflu reaction all over again! Debilitating fatigue and sleepiness set in and made me feel worse. I've spent HOURS online trying to figure out what was happening to me and why. I even went to the doctor (not the same doc that prescribed Tamiflu) and she claimed I was suffering from anxiety and depression. She also said hallucinations and psychosis are documented side effects of Tamiflu, but only 9% of people taking it will experience them and they weren't longterm. She prescribed Lexapro. I took the Lexapro for 4 weeks and it made things 10x worse!! I felt like the Tamiflu reaction all over again! I stopped the Lexapro and started researching natural ways to soothe the central nervous system. Can't say I found an answer though. I even went to a neurologist in June 2013 who said he had seen this occur with antivirals like Tamiflu and even certain classes of antibiotics (fluroquinilones - Cipro, etc.). He said it wasn't a serotonin problem and SSRI's would worsen things. He was glad I stopped the Lexapro and told me to be very careful of certain medications because of my sensitivity. He never labeled me as having HPPD, but he said the only thing to do is wait it out. He recommended a diet filled with organic fruits and veggies, lots of sunshine, and regular exercise. He did an MRI of my brain and an EEG to check for seizures just to be sure. Everything was normal although he noted some non epilepsy related "irritation" in my left temporal lobe which he speculated was the result of migraines. I've never had a migraine in my life, but he said that Tamiflu might have triggered variant migraines and the visuals and perceptual sensations (common in variant migraine suffers) could be arrested with Depakote. After some thought, I decided not to put anymore pharmaceuticals in my body and to just try to ride it out.

Fast forward to now and I am better, but not 100%. I'd say more like 70%. I changed my diet, started seeing a mental health therapist to help with coping strategies for the anxiety and depression I was having. It's been 14 months and I no longer have the anxiety or panic attacks. I'm able to drink coffee and have an occasional glass of wine without any problems. The depression is cyclical because there are days when I feel really good (slight dizziness, slight fogginess but nothing else to speak of), but other days it's not as manageable. Driving at night is still very difficult for me because of the way I feel. I constantly have a sensation of ear fullness where I'm popping my ears all the time. At times the colors in my visual field still seem vibrant and magnified (but putting sunglasses on triggers the depersonalization). The DP isn't quite 24/7 anymore, but I still have a baseline sense of vibration in my head (almost like you're sitting in an idling car). I get bouts of vertigo that seem to come and go without any identifiable trigger. And my memory is still shot. I'm still on a search for answers and I've only recently stumbled across the condition called HPPD and wondered if it's possible if a medication like Tamiflu can cause it. I know many of you might not be able to relate to the effects of this medication, but I know plenty of you can relate to similar effects to known hallucinogens.

Any neuro chemists or well read users that can shed some light into my particular case? How about remedies? Did this medication permanently damage my brain?! Thanks for any info/advice you can provide.

 

[herbavore]

I have never heard of this but it sounds very scary. Good for you for going to a neurologist. I hope you got the message to the prescribing doctor that SSRIs should not be prescribed and will worsen the symptoms.


As far as remedies go, it sounds like you are doing everything right--eating well, staying away from new substances, exercise, etc. Have you considered taking some high quality (without mercury!) fish oil supplements?


I think this thread might be better in our Neuroscience and Pharmacology Forum.I'm going to send it over there and hopefully you will get some good information. Good luck. I commend you for leaving no stone unturned. I just finished reading Brain On Fire and the possibility of going to top neurologists and still being completely mis-diagnosed is frightening to say the least.

 

[Sunlilly]

Hi herbavore! Yes, very scary. I've tripped maybe a handful of times in my early 20's, but never had I experienced what I did on Tamiflu! I never went back to the doctor that prescribed the Lexapro, so I didn't get the opportunity to inform her that her prescribed treatment was way off. In her defense, I WAS exhibiting anxiety and depression, but without a thorough knowledge of neurology and the pharmachological effects of the medication, she prescribed what she thought would help. It's still pretty scary though.

Yes, I did take fish oil at the beginning of this nightmare. I was taking Carlson's Fish Oil with Omega 3's, DHA, & EPA. I don't know if that is considered good quality, but my symptoms were so intense that I didn't think the fish oil was helping so I stopped taking it. I guess it's worth another shot, especially now since things have somewhat leveled off.

Thanks for replying and for moving this thread to the appropriate forum. I'm hoping to get some more helpful replies!

 

[sekio]

There's very little you can do for HPPD, depersonalization/derealization other than therapy and supportive care, unfortunately.

Try to spend time doing activities you enjoy and chances are you will eventually learn not to mind the effects or they will fade as your brain gets better at editing them out.

 

[haikyo]

That sounds awful. I'm sorry that you've had such a reaction. I've never heard of antivirals causing HPPD. I'd be interested to know how the connection works, but my being interested isn't going to help you.

One thing that I would say is to be careful with medicating your symptoms. Antipsychotics are nasty things.

 

[Sunlilly]

...they will fade as your brain gets better at editing them out.

Yes, that's what I think has happened over the last 14 months. The neurologist said it could take 6-12 months to resolve, but I'm past that prediction, so I guess I just have to be patient and hope it goes away with more time.

 

[Sunlilly]

I'd be interested to know how the connection works, but my being interested isn't going to help you.

I'd be interested to know too. I probably wouldn't understand Tamiflu's chemical make-up or what and why it caused me to have the reaction I did, but if even it could be explained to me in understandable terms, it wouldn't change anything except for maybe getting an idea of how reverse, quiet, and/or manage the effects. It might also give me insight to HPPD (if that's really what I have) rather than having doctors throw darts at the wall.

I definitely won't be medicating with antipsychotics, especially if they're known to "reactivate" the initial experience.

 

[sekio]

If you want more generalized advice you should look into PTSD and its treatment. HPPD shares some striking similarities. (both psychological conditions with hard-to-pinpoint physical symptoms, triggered by one event, causing long-term anxiety/panic responses, depression, depersonalization, et cetera.)

A study from 2008 says that:

Animal studies showed no specific CNS/behavioural effects after administration of doses corresponding to > or =100 times the clinical dose. Oseltamivir or oseltamivir carboxylate did not interact with human neuraminidases or with 155 known molecular targets in radioligand binding and functional assays. A review of the information published to date on functional variations of genes relevant to oseltamivir pharmacokinetics and pharmacodynamics and simulated gene knock-out scenarios did not identify any plausible genetic explanations for the observed NPAEs. The available data do not suggest that the incidence of NPAEs in influenza patients receiving oseltamivir is higher than in those who do not, and no mechanism by which oseltamivir or oseltamivir carboxylate could cause or worsen such events could be identified.

In layman's terms: Tamiflu barely makes it into the brain and does not interact with any of the major human receptors or genes that we know of. And this doesn't occur in animals. It really is a total mystery why this happens at all.

Chalk it up to the fragility of the human nervous system. Avoiding antipsychotics and antidepressants is probably a really good idea.

 

[Lightning-Nl]

There's very little you can do for HPPD, depersonalization/derealization other than therapy and supportive care, unfortunately.

In terms of not using drugs to offset the effects of other drugs? Yes. There's very little you can do. However, there are many medications out there which are quite effective for derealization/depersonalization. To name a few...

Lamotrigine - Effective at treating the visual static caused by HPPV, and helped some people with derealization.
Gabapentin - The above, but Gabapentin was WAY more effective at treating the derealization.
Valproate - About same effectiveness as Lamictal

Dopaminergic Drugs - both dopamine agonists and, in some cases, reuptake inhibitors like Methylphenidate and Amphetamine have also been reported to help with HPPV
Beta Blockers - Don't know anything about them other than they're antagonists at beta-adrenergic receptors. This, overall, would decrease panic reactions in response to stimulus, lower blood pressure, sedation, etc. Oh, they also induce asthma attacks in people with asthma.

Hydroxyzine/Promethazine - For some reason - both of the more powerful antihistamines (that have such a broad spectrum of antagonizing monoamine activity that they could technically be considered antipsychotics) have been reported to help with HPPV. Most likely - I would assume this is through 5HT/muscarinic/Alpha antagonism.

Naloxone - Interestingly enough, Naloxone is the most effective treatment that we know of for dissociation. I read a very interesting study on how Naloxone (a Mu antagonist) completely removed any feels of dissociation from the 19 subjects (or something like that) and brought most everyone completely 'back to earth'.

Benzodiazepines - in one specific study I read, they treated people with a low dose of Clonazepam (.5 milligrams) a day. The majority of the people responded saying that they're HPPV symptoms had greatly decreased or went away entirely. With that being said - I DO NOT recommend taking any benzo to treat HPPV. You will be addicted like a motherfucker (trust me, I've been a heavy benzo user for a while now) and the withdrawals from benzo's are almost enough to deter me from taking them.

Imagine your muscles shaking uncontrollably like you're shivering times 10. You feel so nervous and anxious that everything starts becoming a crisis. I dropped a pen cap while withdrawing from 4 milligrams of Lorazepam a day, and just panicked out of nowhere. I was so nervous about everything that I started going through a psychosis. Anyways, I started hearing voices and seeing shadow people.

On top of that you can't sleep. You can't eat. You can't take a dump. Hot water feels like boiling oil. Everything feels like a disaster. And on top of that - you can have seizures and die. So yeah.. dont' take benzo's for something as temporary (in 99% of cases) as HPPV.

 

[endotropic]

I'd be interested to know too. I probably wouldn't understand Tamiflu's chemical make-up or what and why it caused me to have the reaction I did, but if even it could be explained to me in understandable terms, it wouldn't change anything except for maybe getting an idea of how reverse, quiet, and/or manage the effects. It might also give me insight to HPPD (if that's really what I have) rather than having doctors throw darts at the wall.

I definitely won't be medicating with antipsychotics, especially if they're known to "reactivate" the initial experience.

Sorry you've been having such troubles Sunlilly

I think it's still debatable whether Tamiflu causes neuropsychiatric reactions at all. There was a big outcry after a few Japanese adolescents commit suicide while on the drug, but in the clinical trials I've read neuropsychiatric events were just as common in the Tamiflu and the control groups.

What isn't debatable is that feverish viral illness can CERTAINLY cause neuropsychiatric problems, especially in children and adolescents. The figure I've read stated that those problems resolve themselves quickly and spontaneously in 85% of people - which means that 15% are persistent beyond the initial illness.

I hope that information helps somehow, best of luck to you.

 

[Sunlilly]

Thanks, everyone for your replies. This certainly has been a difficult experience, especially since I took this at the advice of a doctor. Of course this isn't to say that everything a doctor tells you is 100% correct, but damn, who else can you trust if not the very ones who are in position to help when you're feeling like total shit? The doctor could have warned me of Tamiflu's rare, but possible neuropsychiatric side effects and/or the Black Box Warning so that I could have weighed the risks vs benefits. I feel that's the least he could have done. I know, I know, the onus was on me to read the medication's package insert, but hindsight is 20/20 (well, probably worse than that if you have hppd). I guess it just goes to show that anything you put in your body has the potential to cause effects. Oh well. That's my rant. Thanks again for replying!

 

[atara]

Unfortunately, it appears this is not out of the ordinary when it comes to oseltamivir.

http://en.wikipedia.org/wiki/Oseltamivir#Neuropsychiatric_side_effects

In trials of prevention in adults one person was harmed for every 94 treated. This included events such as nervousness, aggression, hallucinations, psychosis, suicide ideation and paranoia.

Oh, medi-jargon, how you leave us with more questions than we came with.

There seems to be some blurring of the lines here between migraine symptoms and HPPD symptoms, and it's got me wondering if the two might not be unrelated.

She prescribed Lexapro.

What did she say about Lexapro (escitalopram)? Most studies I can find where escitalopram is used in psychosis either combine it with a pluripotent monoamine antagonist ("atypical antipsychotic") or combine "psychosis" with "agitation". It doesn't seem likely to help in any case, or at least I can find no precedent for its usage.

It does sound like you have untreated headache pain. Aspirin, acetaminophen, cannabis, or similar might help. There's no reason to make yourself more uncomfortable than you need to be -- specifically, this "sense of ear fullness". You might want to talk to a doctor about that specifically; something like Strattera or other vasoconstrictor may help.

However, your other symptoms -- vertigo, visuals, depersonalization -- seem to be amplified by sensory deprivation. They are also typical effects of sensory deprivation. In addition to a healthy lifestyle, you may feel better if you make sure to spend a couple hours outside every day, and listen to music or play video games or some similar stimulating activity more often. The somewhat unique thing about the Internet compared to everything that came before it is that it tends to be quieter and less visually interesting than the forms of entertainment it replaced. Unfortunately this might be creating a generation of boring people. You found bluelight, so we know you spend plenty of time on these screens.

If you find yourself feeling better, or if you're already comfortable with the idea, you could try meditation. It's not always the best idea to start meditating regularly at a very low point -- some people get "stuck" focusing on negative things that surround them -- but many more people find they experience some benefit from regular meditation. A great intro is Mindfulness in Plain English, there's also a guide by Sam Harris, or Alan Watts. If you start meditating, it'll make your life easier, and you won't miss out on anything, to ignore any philosophical discussions about meditation or Buddhism. Trying to decide whether people can be reincarnated or something is a waste of time.

These last couple paragraphs are not as well supported by links as what I usually like to post; the content is mostly my experience. Your mileage may vary.

 

[DL-ark]

I don't know if I would describe this as HPPD, it sounds more like psychosis. They are distinctly different - HPPD is generally a lot of snow with some patterning now and again, along with eye floater increase and occasional tracers. I have HPPD and I have never had auditory hallucinations but it is possible that someone else who has HPPD would have them. However it sounds way more like a form of psychosis than HPPD, which is relatively benign (in my experience, although this could be naive).