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*adults* who were diagnosed with/discovered they had PANS


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Hi,

 

I have posted one other thread, about a particularly perplexing form of headache.

 

Well, I wanted to elaborate more, and ask for other people's stories. For several years I have been having that strange headache, which involves a flulike sort of neck tension and a sort of electrical/"zappy" feeling in my head. Various things could bring it on, from too much caffeine to sleep deprivation to just a general flare-up in my symptoms. I was diagnosed with Lyme in 2002, and treated with about 6 years of antibiotics, but peripheral neuropathy and some nonspecific mood symptoms like irritability remained, along with the above-mentioned bizarre headache, which emerged around 2008 or so (i.e. *after* I had been off antibiotics for several years). These gradually got better with various supplements and mere time for the body to recover.

 

On the other hand, about a month and a half ago I had a stressful experience with a therapist, with whom I didn't get along and who in some way suggested I was "crazy". I stopped seeing him, but until I had a chance to see a different therapist who reassured me, I was stressed out and had a week of insomnia. In that week, the headache also flared, to where it was rather a constant thing. Shortly before I resolved my emotional stress with the new therapist, I went on a benzodiazepine temporarily for sleep. The first night of taking this, despite taking a rather high dose, it took me a long time to fall asleep. Even when my emotional anxiety had dissipated, it felt like part of my brain, namely the area near the base of my brain/top of my spine from which the headaches seemed to be radiating, stubbornly refused to switch off, even as the rest of my brain was trying to sleep.

 

Once resolving the psychological stress, which was ~2 days after starting the benzodiazepine, I tapered it to nothing over 2-3 more days. So, this was a very short course. A few days later, the insomnia/headache comes back, without a new emotional trigger. I eventually end up going on another benzodiazepine for about a week, then switching back to the first one because that didn't work. I was only on the full dose of each for three days, but I am having serious trouble quitting the benzo already. The problem is, every dose reduction causes this headache to return, triggering several days of insomnia, even though I have had period of 5 or more days of normal sleep in between. My doctor (who is not a psychiatrist, but a general practitioner with knowledge of mood disorders) has tried giving me other non-habit-forming medications to try and help me discontinue the benzo, but aside from some success with gabapentin, nothing helps better than OTC sleep aids, which still don't help much when in a "flare".

 

I really feel, given my history with Lyme and the headaches, that it is counterproductive to treat this primarily as a mood disorder. I feel it much more likely to be a neurological disorder with mood manifestations, than a mood disorder with neurological manifestations. My mom (who I live with) seems in general to disagree, and given that I don't have a full-time job, I don't have the money to run around seeing neurologists. Plus, even if I did, I fear that they would not find anything wrong, that any damage to my nervous system is too subtle to be seen by tests.

 

So I'm wondering, other people who were diagnosed with PANS (or Lyme) as adults, what was the biggest clue that what you had wasn't a "mere" psychiatric or mood disorder? What path did you have to take to get treatment beyond antidepressants/anxiety meds?

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Hi,

 

I have posted one other thread, about a particularly perplexing form of headache.

 

Well, I wanted to elaborate more, and ask for other people's stories. For several years I have been having that strange headache, which involves a flulike sort of neck tension and a sort of electrical/"zappy" feeling in my head. Various things could bring it on, from too much caffeine to sleep deprivation to just a general flare-up in my symptoms. I was diagnosed with Lyme in 2002, and treated with about 6 years of antibiotics, but peripheral neuropathy and some nonspecific mood symptoms like irritability remained, along with the above-mentioned bizarre headache, which emerged around 2008 or so (i.e. *after* I had been off antibiotics for several years). These gradually got better with various supplements and mere time for the body to recover.

 

On the other hand, about a month and a half ago I had a stressful experience with a therapist, with whom I didn't get along and who in some way suggested I was "crazy". I stopped seeing him, but until I had a chance to see a different therapist who reassured me, I was stressed out and had a week of insomnia. In that week, the headache also flared, to where it was rather a constant thing. Shortly before I resolved my emotional stress with the new therapist, I went on a benzodiazepine temporarily for sleep. The first night of taking this, despite taking a rather high dose, it took me a long time to fall asleep. Even when my emotional anxiety had dissipated, it felt like part of my brain, namely the area near the base of my brain/top of my spine from which the headaches seemed to be radiating, stubbornly refused to switch off, even as the rest of my brain was trying to sleep.

 

Once resolving the psychological stress, which was ~2 days after starting the benzodiazepine, I tapered it to nothing over 2-3 more days. So, this was a very short course. A few days later, the insomnia/headache comes back, without a new emotional trigger. I eventually end up going on another benzodiazepine for about a week, then switching back to the first one because that didn't work. I was only on the full dose of each for three days, but I am having serious trouble quitting the benzo already. The problem is, every dose reduction causes this headache to return, triggering several days of insomnia, even though I have had period of 5 or more days of normal sleep in between. My doctor (who is not a psychiatrist, but a general practitioner with knowledge of mood disorders) has tried giving me other non-habit-forming medications to try and help me discontinue the benzo, but aside from some success with gabapentin, nothing helps better than OTC sleep aids, which still don't help much when in a "flare".

 

I really feel, given my history with Lyme and the headaches, that it is counterproductive to treat this primarily as a mood disorder. I feel it much more likely to be a neurological disorder with mood manifestations, than a mood disorder with neurological manifestations. My mom (who I live with) seems in general to disagree, and given that I don't have a full-time job, I don't have the money to run around seeing neurologists. Plus, even if I did, I fear that they would not find anything wrong, that any damage to my nervous system is too subtle to be seen by tests.

 

So I'm wondering, other people who were diagnosed with PANS (or Lyme) as adults, what was the biggest clue that what you had wasn't a "mere" psychiatric or mood disorder? What path did you have to take to get treatment beyond antidepressants/anxiety meds?

 

Does wind on your face trigger a headache?

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Does wind on your face trigger a headache?

 

No, it's never triggered by anything external, always internal--drugs, sleep deprivation, prolonged anxiety, and sometimes just random chance.

 

Thanks for the link, but trigeminal neuralgia doesn't sound like it at all. The pain never radiates to points on the surface of my head. In fact, in many ways calling it a "headache" is a misnomer, because it isn't like a typical headache (including the stress-type, pounding sort of headache). The closest thing my pre-Lyme self would have been able to compare it to is the achy stiff neck that sometimes accompanies a bad case of the flu. I've heard that many people with meningitis have a similar internal feeling in their neck, and know that Lyme can cause low-grade meningitis, but haven't heard that being connected with insomnia and the general sense of "overactive lower brain" (as opposed to mind or thinking/feeling brain) that I have.

 

Seeing as too much caffeine has been a trigger, and now benzo withdrawal can make it a days-long phenomenon, I have to wonder whether it is some sort of sub-threshold seizure activity, or some kind of panic attack that manifests itself physically rather than emotionally. It definitely feels like an inflammation-related thing, though (and aspirin sometimes helps it, both the physical sensation and the psychological irritability/disquiet that goes along with it, and which is not a simple reaction to the sensation). I wouldn't be surprised if some of your people's kids who act out in bizarre ways aren't reacting to a similar restless, irritated brain sensation as I'm describing, just they could never put it into words.

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