Resolved question:
I have a complicated medical problem/history, and need to know where I can go/what I should do to get some actual help for my problem.
My history:
Depression/anxiety since teenager- treated with Lexapro 5mg,
POTS (postural orthostatic tachycardia syndrome) approx 7 years ago- mainly resolved, but can still have flares of tachycardyia,
Interstitial Cystitis 6 years ago- managed with diet
IBS (abdominal pain, food intolerances, brain fog) 5 years ago- managed with diet but easily aggravated with medication/supplements, etc.
I've been experiencing chronic facial/sinus pressure/pain and corresponding brain fog and depression for the past 2+ years. I began having mild issues 6 years ago following a sinus infection that mainly caused some brain fog, fatigue & sinus "pressure". The symptoms became more problematic and 2+ years ago, a trip to Minnesota and change in living environment caused a huge flare with increasing symptoms- facial pressure and pain, mental problems. Allergens (dogs, cats, molds) and various other triggers (candles, chemicals, foods) can exacerbate symptoms and can cause pain, but the pressure (feels like inflammation) is constant and is coupled with brain fog and depression. I have so far seen 3 allergists (no allergies based on blood work), an ENT (clear CT scan), a neurologist (clear MRI), a rheumatologist (no autoimmune issues as far as she could tell based on labs. Inflammatory markers okay except some white blood cells high), and 2 pain specialists and all I have is a diagnosis of atypical facial pain.
I believe my issue is nerve/immune related, but I have no idea who to see who can actually offer any help.
The only thing I have found that helps manage the pressure/pain/cognitive issues is prednisone- 10 mg /day. No doctor likes me taking this, but I have no idea what else to do, and they don't offer any good alternatives. I've also had trigeminal nerve blocks which helped for a few days, but this may have been because steroids were used. I felt the best I had in years while on Macrobid for a bladder infection and a week following (could I be overreacting to bacteria in my sinuses?). This was the only time I've been able to get off prednsione in the past 1.5 years. Gabapentin works somewhat, but increasingly less over time. Lyrica seemed to help, but I became depressed while taking it over the course of a few days. The latest pain doctor I'm seeing did a sphenopalatine ganglion block, which had a curious result of decreasing some mild pain, but made the pressure/mental issues slightly worse.
I also take antihistamines and singulair. Antihistamines that cause drowsiness work the best, but I cannot tolerate them everyday.
I cannot tolerate anything up my nose (steroids, antihistamines, nasal sprays). Most everything I put up my nose only makes it worse. I cannot tolerate SNRI's and they don't seem to help much. I cannot tolerate NSAIDS and they don't help enough either. Nortriptyline makes me depressed. I've tried fish oils, b12, and every other supplement under the sun as well.
I asked my pain doctor about how I should address the inflammatory sensation/pressure/brain fog/depression (I experience this all as one symptom) that I treat with prednisone, and he ignored me. And this is basically the same response I've gotten from all the other doctors with advice to taper off the prednisone and try the latest antidepressant.
At this point, I'm not even hoping for an exact diagnosis, I'd just like help treating the primary symptom- inflammatory sensation/pressure/brain fog/depression. Who specifically can I see and what types of treatments will help with this issue? I feel like I keep throwing money at doctors trying to get relief, and it's getting me nowhere.
Submitted:
4 Days
Category:
Family Physician-GP
Hello,
I am sorry to hear about your symptoms. I understand that these can be really troubling and frustrating since you are having long term symptoms without much relief.
1. A single diagnosis, as you said might be difficult. This symptoms appears to be because of a complex psychosomatic interaction. The positive thing here is that there appears to be no obvious life threatening or serious medical issue here.
2. You should taper Prednisolone to a lower dose. Anyway since you are using it for a longer duration 5mg dose is good enough. The ultimate aim should be to taper the dose and stop.
3. Trigeminal neuralgia need to be ruled out in your case. Carbamazepine (prescription only) can be given a trial. This might bring a good relief for the pain.
4. Make sure you are not taking any other ‘trial’ medication. Cut down to only essential medication. Can you give a list of medication you are taking on a daily basis? (You can reply as a followup)
5. Are you on any Psychiatrist follow-up or care ? Are you currently taking anti psychiatric medication?
6.Are you Physically fit ? Do you exercise on a regular basis ?
You can reply as a followup
Thank you
I understand there are some "psychiatric" issues, but I've never received adequate care when doctors point me in that direction. When I developed POTS, I was told I had anxiety. When I had chronic stomach pain and food intolerances, I was told to look into mood stabilisers. I diagnosed myself with POTS before getting a firm diagnosis from a specialist and was able to resolve my chronic stomach problems with a course of antibiotics and sticking to a low FODMAP diet that I had read about online. If I treated my problems as purely psychiatric in origin I would still be dealing with those other conditions and even more miserable.
Carbamazepine did not work for me. I was mainly asking this question to see if there was any specialty that would not treat me as a just a pain case or just a pyschiatric case as inflammation feels like a huge component for both issues.
Hello,
Please allow me to clarify.
I am not saying your symptoms are due to a psychiatric illness. However it has to be addressed as this will result in (1) less complexity of symptoms (2) Less attenuation of pain.
This will really help in reaching in a conclusive diagnosis much easily. This amount of pain is not related to psychiatric illness. Evidence of response to Prednisolone is suggestive of inflammation. Since you have negative response to pain medication other methods like denervation can be considered. This involves indemnifying the nerves that are involved in the pain pathway and the selectively destroying it. However before this option you have to make sure all possible diagnostic and therapeutic options are considered. I recommend discussing this option with your Pain Management specialist. A Internist (Internal Medicine Specialist ) and a Rheumatologist will be the best specialists suited for you.
Hope this helps
Please feel free to ask followup questions.
Thank you