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Avatar universal

REALLY need some answers. Please help!

Hi Folks:

I am praying and hoping that someone in this Forum (or another - I will post my "case study" in a few places with the hope of getting an answer or some suggestions) can help me figure out what is wrong with me. To date I have seen at least 13 (THIRTEEN) doctors and none of them can give me a solid diagnosis - and meanwhile, I am still symptomatic of SOMETHING, and don't know what to do.

So here's the facts.

Current Medical Status:

1. Weight Loss ≤ 18 pounds since 12/1/09 (history of anorexia (w/exercise bulimia)/OCD)
2. Diagnosed with PCOS years ago
3. ≈ 15 “episodes” of visual disturbance each lasting anywhere from 30 seconds - 2 minutes with no *real* headache before or afterwards (by visual disturbance I mean: colors flickering, moving across my vision, followed by blurred-tunnel vision/inability to focus) and then it resolves on its own
4. Possible triggers? Changes in weather, extreme stress, weight loss, skipping meals, anxiety, low BP?, family history of migraine (Father (20 years))
5. At times also experiencing pulsatile tinnitus(?) or the sensation of hearing my heart beating/pounding in my head and/or ears.
6. Brain MRI (w/o contrast) = Normal
7. EEG = “Unremarkable & within normal limits”
8. Since 12/1/09 have had *persistent* "floaters" to one degree or another in one or both of my eyes (at first, one ophtho said they were "inflammatory cells" caused by some lower corneal irritation - used eyedrops for a week, wore my glasses (instead of contacts) return visit showed no more inflammatory cells, however TO THIS DAY: floaters persist.
9. Bloodwork 3/1/10 checking for: full CBC panel; vitamin deficiencies; Lyme Disease; inflammatory disease/processes; electrolytes = Normal

To date I have seen: 2 GP's, 2 ENT's, 2 Ophthalmologists, 2 Neurologists, 1 Endocrinologist, 1 Psychiatrist, 1 CBT Psychologist, and 1 OB/GYN and no one, definitively, can give me a solid diagnosis.

(Suggested) Diagnoses to Date

1. Generalized Anxiety Disorder (Is this all anxiety-related?)
2. Atypical/Ocular/Ophthalmological/Frustrated Migraine/Aura
3. Macular Keratitis/Primary Iridocyclitis
4. "I hate to say this, but some of what you're describing actually sounds "fantastic," like, it doesn't make any medical sense"” (ENT #2)

I literally feel like I'm losing my mind. Not a SINGLE doctor I have seen can tell me what's going on here. They say a lot of "could be" and "might be" and "possibly" and no one seems to think my symptoms are "severe" enough to warrant any kind of treatment, but the ongoing symptoms (floaters, "visual episodes", strange auditory episodes, etc.) are really, really having a tremendously negative effect on my quality of life. I wish there was SOMETHING I could know/do to make this all go away.

I have some feeling that I may be experiencing adverse effects of long-term use of Klonopin. I've done some reading on tolerance-withdrawal” effects (as in, my body is "detoxing" itself because the dose I am on is not high enough and it needs more), but no specialist I've seen thinks that is a legitimate diagnosis.

Also, if it's any help, here is my drug (Prescription & Non-Prescription) history:

Date Drug Dx Rx How long on it?
2004 Zoloft (generic) Anorexia/Depression/Anxiety 25-100mg 3 years (no longer taking)
2004 Ativan (generic) Anorexia/Depression/Anxiety 0.5-1.0mg Several weeks (no longer taking)
2009 Klonopin (generic) Generalized Anxiety Disorder 1.0mg (0.5/2x day) 1 year+ (still taking)
2009 MIRALAX Chronic Constipation As per label 6 months – 1 year (still taking)
2010 TwinLab Vitamin B2 Headache/Visual Disturbances 100mg (2 capsules/2x day) 2 months (no longer taking -- symptoms persisted while taking it, second neurologist suggested I discontinue)
2010 Vita Medica PM Multi-Vitamin Headache/Visual Disturbances [Neuro prescribed 400mg magnesium (stomach couldn’t tolerate); getting 300mg in a multivitamin instead] 2 months (still taking)

I so hope someone can help me. I feel like everyone in the medical community has written me off. And going to CBT once a week is doing NOTHING for my organic symptoms.

Thanks in advance!
5 Responses
620923 tn?1452919248
Hi..I would suggest u get copies of ur MRI and the report ...u may want to get a second opinion...and remember many times the radiologists report on what they  r told to look at.....not always what is present..so , get another NS to read them.

Good Luck
"selma"
Avatar universal
Well, I have to tell you, I have had 2 ENT's look at the MRI, and 2 neurologists (both the slides and the report) and both said they were clean. Do I still need someone ELSE to look at them? And again, I had one without contrast dye (the 2 neurologists seemed to think having it done with dye wouldn't make much difference since the one without was totally clean). Thoughts? I am SO frustrated and tired.
Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you? I'm sorry to hear what you have been through for the past months. It is good that your diagnostic tests were normal. If there were several doctors who have seen the results and plates and think they are clean, then it is more likely that they are. It could be that you need to adjust your Klonopin since this can also be anxiety related.  Acephalgic form of migraine occurs when the headache phase is not felt. But  visual or optic symptoms are experienced for  a longer period of time. This presents as flashing or scintillating light. Medications for migraine may help provide relief. The diagnosis of amigranious or acephalgic migraine is quite a difficult task. And you need to work closely with your doctor for proper evaluation. Hang on and do keep us posted.
Avatar universal
Hi Dr. Santos:

Thank you for your reply. So you do believe that the symptoms I am experiencing (ocular episodes, sometimes auditory, floaters, etc.) could be related to JUST anxiety??? I find that so hard to believe, for some reason, because they present to me as "organic" and I only feel upset/sad/frustrated by them because they EXIST, not the other way around (i.e. anxiety --> symptoms, but rather symptoms --> anxiety), if that makes sense. I just continue to be symptomatic and can't see how these ocular disturbances, the strange whooshing/grinding sound in my ears, feeling so *strange* etc. could be related solely to anxiety. It doesn't make medical sense to me, you know -- that's why I keep searching/insisting on an organic cause.

I am doing CBT vs. raising the Klonopin, because working for the pharma industry and being well-versed in pharmacology, I know that Klonopin, in many cases, stops working after a certain point and isn't really indicated for long-term use. I've been on it for about a year. Plus I am already at the therapeutic dose for GAD/panic disorder (0.5mg/2x day). Even the PI for the drug says that doses of 2.0,3.0, and 4.0mg a day show no increase in efficacy and only an increase in adverse events -- so I am hesitant to take that route.

Thoughts?
Avatar universal
MEDICAL PROFESSIONAL
Hi,
A diagnosis of anxiety disorder can be made by fulfilling a criteria and by consulting with a psychologist. Anxiety disorder is often characterized by chronic anxiety, exaggerated worry and tension, even when there is little or nothing to provoke it.  These worries are accompanied by physical symptoms, especially fatigue, headaches, muscle tension, muscle aches, trembling, twitching, irritability, and hot flashes. If you were already diagnosed with this, you may want to discuss your management plan with your doctor. Take care always.
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620923 tn?1452919248
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