Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Any advice oh brilliant ones?
For past year, I saw a wonderful therapeutic psychiatrist -- super-supportive and most importantly understood nearly all of the medical/physical side of all things neuro. He especially was helpful with my horrid vision DX of functional loss/conversion disorder. He worked well with my long-standing prescribing Psychiatrist who remains a trusted & treating physician.
If not for the IIH/whatever-this-is symptoms, I wouldn't have sought out therapeutic psych care, but as we all know, fighting these things can wear one down to depression and certainly ramp anxiety up to a level 100.
My therapeutic psych moved up in his residency, treatment ended last month, and he & his attendings gave me a bunch of recommendations for other providers. I did initial consults (interviews) with more than 7 of them (ugh). I decided on an LPC/RN who seemed to be a good fit from my phone time with her.
Yesterday, I had my 3rd appt. with her and was blown away when she said that I all I speak about is my medical condition, and very little about how I feel overall. I said something to the effect of, My head and eyes hurt so badly, that I cant think about what I feel beyond pain. Can you help me with a therapeutic approach to coping with chronic pain (I mentioned Mindfulness & Guided Imagery)? Her answer was, thats what the Pain Clinic is for; I dont do that. Im not sure I can treat you if what you want is something that your doctors should be treating. I say, OK, I can tell you that Im frustrated, desperately sad at the losses this condition has wrought, and actually pretty angry at the way Ive been treated by certain providers. She responded with, If were going to continue to discuss your medical condition, then I cant help you. I need you to come back with how you feel.
But then.she mentioned the functional loss/conversion disorder DX I got from Neuro-Ophth. She said, Are you sure that your headaches arent functional as well? Is this why doctors arent able to treat your headaches?
The last thing I need is some random note in a psych file that says theres a suspicion of conversion disorder extending beyond the vision symptoms. My gut tells me to run like mad and never go back to her or anyone else at this point beyond my long-time prescribing Psychiatrist.
I received my official discharge from the outpatient therapeutic psych program, however it says, because Ive elected to receive care elsewhere. My disability coverage is very specific in mandating that I cannot refuse/ignore treatment without threat of benefit discontinuation. Technically, Im supposed to be receiving care elsewhere.
Frankly Im tired of psychs, stressed by the copays & transport costs and now worried about any new providers notes. But, I cant jeopardize disability.
What to do?
For past year, I saw a wonderful therapeutic psychiatrist -- super-supportive and most importantly understood nearly all of the medical/physical side of all things neuro. He especially was helpful with my horrid vision DX of functional loss/conversion disorder. He worked well with my long-standing prescribing Psychiatrist who remains a trusted & treating physician.
If not for the IIH/whatever-this-is symptoms, I wouldn't have sought out therapeutic psych care, but as we all know, fighting these things can wear one down to depression and certainly ramp anxiety up to a level 100.
My therapeutic psych moved up in his residency, treatment ended last month, and he & his attendings gave me a bunch of recommendations for other providers. I did initial consults (interviews) with more than 7 of them (ugh). I decided on an LPC/RN who seemed to be a good fit from my phone time with her.
Yesterday, I had my 3rd appt. with her and was blown away when she said that I all I speak about is my medical condition, and very little about how I feel overall. I said something to the effect of, My head and eyes hurt so badly, that I cant think about what I feel beyond pain. Can you help me with a therapeutic approach to coping with chronic pain (I mentioned Mindfulness & Guided Imagery)? Her answer was, thats what the Pain Clinic is for; I dont do that. Im not sure I can treat you if what you want is something that your doctors should be treating. I say, OK, I can tell you that Im frustrated, desperately sad at the losses this condition has wrought, and actually pretty angry at the way Ive been treated by certain providers. She responded with, If were going to continue to discuss your medical condition, then I cant help you. I need you to come back with how you feel.
But then.she mentioned the functional loss/conversion disorder DX I got from Neuro-Ophth. She said, Are you sure that your headaches arent functional as well? Is this why doctors arent able to treat your headaches?
The last thing I need is some random note in a psych file that says theres a suspicion of conversion disorder extending beyond the vision symptoms. My gut tells me to run like mad and never go back to her or anyone else at this point beyond my long-time prescribing Psychiatrist.
I received my official discharge from the outpatient therapeutic psych program, however it says, because Ive elected to receive care elsewhere. My disability coverage is very specific in mandating that I cannot refuse/ignore treatment without threat of benefit discontinuation. Technically, Im supposed to be receiving care elsewhere.
Frankly Im tired of psychs, stressed by the copays & transport costs and now worried about any new providers notes. But, I cant jeopardize disability.
What to do?
I would run from her like the clappers - how dare she start talking functional headaches!!! - how dare she!!!! dont go back to her and be sure to double check your notes.
BUT you are right that IIH is a lot to deal with. I saw a holistic psychotherapist who used hypnotherapy, CBT and NLP together, for a bit, and it really helped me, but i did it outside our NHS system so the stupid GPs couldnt infer anything from my notes. I had to stop after a bit though, i couldnt afford to pay for it myself. Now i just keep it all suppressed as things are much rosier - but it will all crack if i ever dip again, but hey ho ;)
Its much healthier to deal with it though, if you have to go through the system for insurance, but i would definitely try another one. They cant all be unfeeling beaches. xx
I don't suppose there is any appropriate way to contact your previous psych resident and ask for his further guidance? That would be ideal but perhaps not feasible. The unfortunate thing with therapists is it can be hard to know for sure if they will "get" you until you get to know them.
Actually, your letter can say anything it wants about anything you want. The point is that they have to put it in your chart. If your insurance/disability company sees the letter and/or chart notes they will also see your letter. Write it quick - it must be timely. Have someone review it for clarity and professionalism. (I'd want to name-call or take a certain tone but now's not the time for it.) If you are super paranoid, wait a couple of months then ask for a copy of your letter out of your chart just to make sure they put it in there.
I'd love to do this all by cash and off-the-record, but like you say Keren, it's unaffordable. I've exhausted reduced fee programs and other cost-shifting, so now I've either got to go through insurance (which means disability has access to the records) or I pay cash which is upwards of $200/hour. So it might as well be $2,000 per hour. That's why I'm thinking of just doing some self-coping and managing best I can.
Insurance is making my life quite a bit harder than just dealing with the disease, etc. And, thank you Sea for the recommendation to place a letter in my chart -- that's something I'd of missed.
So, I'll share a funny to give you an idea of just how odd this woman is....the 2nd time I go in, I greet her with a "hello, how's your week been?" She turns 'round, looks at me (I think - can't see that well), pauses forever and says, "I don't discuss my other patients with anyone!" Then she moves into her office, and I respond with, "I was just being cordial, not nosy. Sorry if I caused offense." She pauses again and finally comes back with....."Oh, a pleasantry. Hmmmmm."
I should've run outta there right then.
I currently do both mindfulness and CBT weekly, so I understand very well how costly it can become. Not to mention, if you aren't seeing someone you trust, or someone you are compatible with, you're just throwing away time and money. If you decide to branch out on your own and engage in self-help therapy, there are tons of resources out there...it's just a matter of finding the right ones.
Here's some things I use that are low-cost and/or free:
Progressive muscle relaxation (great for muscle pain and tension related pain):
http://www.law.berkeley.edu/files/Progressive_Muscle_Relaxation.pdf
What I've done is taken that script and I recorded myself reading it, you can record your voice, a friends, whomsoever voice you find pleasant. So, I just sit back, close my eyes, press play and go through all the movements.
Also, I absolutely love the mindfulness bells, it makes me feel extremely relaxed. There are tons of apps available for phones now a days, but there are also computer applications like the one below.
http://fungie.info/bell/#
While on the point of audio, there is also a tune that has been deemed the most relaxing song in existence. When I'm feeling especially rough, I will lay down, turn off the lights, close my eyes and listen to the full song (it really helps to get into a deep state of meditation)
Manchester band, Marconi Union- "Weightless"
https://www.youtube.com/watch?v=VKI92De-t4U
Also, I have several recommendations for CBT literature as well, but only one title is coming to mind right now (blame the IIH lol). Mind Over Mood is a great workbook for CBT that allows you engage in various writing activities in the form of worksheets.
One more idea...if you haven't already, look and see if they have any mindfulness research studies in your area. I know I've seen several programs where I live, most will allow you to seek care for free and some lucky ones even pay you to participate.
Lastly, this isn't a tip, just something I wanted to bring up. The LPC/RN you saw, she broke the one rule that should never be broken. She invalidated your feelings, what you feel the frustration, depression, anger, etc. those are real feelings, those are real emotions! Shame on her for being unsuccessful, but I hope you don't let her bad attitude steer you away from future psychiatric care, a real professional would acknowledge your feelings and respect them because everyone deserves that.
That's all for now, I'm going to brain storm a bit and come back with more suggestions later.
If you can get things right with disability so you don't have to continue to see a therapist, that might be the right thing for the time being. It really needs to relieve more stress than it causes! I once took a course called Mindfulness Based Stress Reduction that you should be able to find offered in your area if you are interested. It's a standardized, 8(?) week course designed by a man named Jon Kabat Zinn. It is good for practically anyone, including those suffering from depression, anxiety, chronic illness, etc. I can't say enough good things about it. It would cost a couple of hundred dollars out of pocket but it is a one time fee, not a recurring one. Just a thought. :)
I went one time and it was a mistake. just as she was accusing you of being wrapped up in your medical condition, she is wrapped up in her biased view of the world. they cannot be trusted. the psych stuff is diagnoses of exclusion. find a doc willing to state it is excluded, and be done with that crap.
Frist off... I'm still frustrated for you that you got stuck in this loop of seeking conversion disorder treatment-- clearly not helpful.
Might be a good idea to get a copy of your chart notes; make corrections on a copy (one line through the parts that are incorrect) in your letter discuss the corrections that need to be made and then append the draft copy (with your edits) so that they have a detailed copy with exactly what you disagree with. Any opportunity to leave as little ambiguity as possible will be in your favour.
I had do to that with a consult note from a neuro who put in my past medical history section "anxiety" (I've never been assessed for, dx with anxiety, nor did we discuss it) then I sent a further letter to the emerge department who based their entire encounter with me off of that, dismissed everything "as per Dr. Morrow's note, re: anxiety?" It's very important.
What good is it to be a Mental health nurse if you can't connect with people on a very basic level. It doesn't take rocket science to figure out that you physical pain is going to be a huge part of your emotional & spiritual unrest--and certainly shouldn't be a novel concept for someone who specializes in chronic pain :( I'm so sorry... as a mental health nurse myself, I am terribly disappointed that this was your experience...
I can't remember if you are on disability through your work or the govt? Some work places have employee assistance programs--mine does, and they have a list of counselors, psychologists who are covered as part of an extended benefits plan... not sure if it applies... but it might be worth looking into.
Good luck PC!
Mellow: great resources and I'll be sure to check them out - thanks!
RN: I've run across Zinn's name here & there, so will look into this more.
Sophiasmom: Agreed and sadly, it's what I need to do. I did like therapy before and it helped as I'm wound a bit tight, but it's not worth the risk anymore. Expletive these people.
Taleema: thanks for good thoughts and ideas of where to look now if I decide to continue -- no EAP here as I lost my job because of the headaches 2 years ago; am now self-insured until Medicare hits in December. Thing is I wasn't going for conversion disorder treatment in any way because I don't believe it fits me. She just saw the note from the horrid NO who DX'd that. So in effect, this psych turned general chronic pain coping therapy (specified in writing) into something altogether different - terrible practice.
Aim: Yes, this duck was quacking and waddling, that's why I started with "stupid, stupid me". Thanks for your good wishes!
So, I will write my letter this weekend and have it placed in my chart next week, then move along. When I first spoke to this woman, I faxed her a list of therapeutic treatment goals and objectives; all of which clearly state that therapy is needed to address anxiety & frustrations due to chronic pain & medical condition(s). That document in itself lays a solid groundwork for the next & final letter for my chart, don't you think?
As for mandated continuation of care, I can simply state that it poses financial hardship (it does) and that I've explored all the reduced fee programs available. Mental Health, while covered by my insurance, is not available near my home in the mountains. No one can say I didn't try and I'll ask my prescribing Psych to issue a statement that continued therapy is not medically mandatory.
Cannot say enough how much I appreciate everyone's good thinking and thoughts. Peace to all.