Neuropathy? Endocrinology? Something else.

Posted by letapumamatt @letapumamatt, Nov 16 4:47pm

Hi all,

I debated as to which group to post this under, but as paresthesia was one of my first symptoms, I chose here. I just want to see if anyone has experienced anything similar. I'm 46, male, a bit overweight, treatment-resistant depression. Been on Adderall XR 60mg for 6 years, lamotrigine 200 mg for 2 months, Lisinopril 5 mg, cetirizine 10 mg for 6 moths, Flonase, gabapentin 1800mg for 6 months, omeprazole for one month.

In April I had a "tired eyes" feeling, which was kind of a numbness at the bridge of my nose. That came with difficulty focusing on objects in the distance, perhaps a bit of double vision. That lasted for three days, then disappeared.

In May, there were a couple nights where I laid down and felt my feet starting to feel warm and flush. That was soon replaced by this odd feeling like something was sitting on top of my feet. It wasn't painful, and I suppose it was kind of a numbness.

There were two occasions where I started to have tightness in my diaphragm and rather severe anxiety. It was then that I started to have tingling all around my head, which lasted for a few hours to a day or two. There were two times in July and September when the anxiety hit, and the tingling became pins and needles, and I went into near-panic, which lasted 4 to 5 hours. I was prescribed Ativan (0.5 mg twice a day) which helped somewhat. One other troubling sensation was a numbness/tightening of my chest muscles, with like an internal itchy feeling. When this happened, it was extremely uncomfortable to have anything touching my chest (like a seat belt).

Since September, there's been a pattern that's developed: the numbness between my eyes, followed (a few hours or a day later) by occasional dry flushing of my hands and/or ears (often just one hand or one ear). The dry flushing usually causes my blood pressure to go up just a bit, but there's no anxiety. When it affects my hands, it can last for several hours. There are now times when the flushing comes with rather significant acid reflux- no pain, but regurgitation into my throat which makes it difficult to swallow. Fortunately, the tingling has decreased significantly in the past week or so.

One other odd symptom has developed: incredibly loud ringing in just my left ear, but not at the same time as any of the other symptoms.

I've had lab work done- everything OK except slightly low iron and ferritin (on supplements) and high eosinophils (both # and %) which have been high for several years now. Brain MRI showed no issues. I've brought up the possibility of MS to my PCP, because I also have bladder issues (lots of leaking after urination) and constipation.

I'm so sorry for such a long post. I've been keeping a log of syptoms. My PCP has no idea what's going on. I have appointments with audiology this month, endocrinology next month, and neurology in January. Looking for ideas/support/similar stories in order to be fully ready for these appointments.

Matt

Interested in more discussions like this? Go to the Neuropathy Support Group.

I have paraesthesia too, but only in feet and intermittently in hands. It’s very disturbing. I’m still seeing ENT (also had smell/taste disorder that mostly resolved due to Post Covid Syndrome) neurologist (B12 deficiency), rheumatologist (Autoimmune ruled out, though do have Type 1 diabetes), endocrinologist for my type 1. It’s still a mystery, though I am improving.

I have discovered that many patients deal with these symptoms and are much worse than me. I’m grateful that I feel good physically despite my issues and am able to be very active.

I hope you can get the answers you need. I would imagine the facial sensations would be very concerning,

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I have had "paresthesias" (mainly arms and now left side of face) since 2001. Your high eosinophils seem significant. Is there an allergy or similar immune system response going on? Maybe to one of your meds? I get a lot of weird sensations (including chills even when in a hot shower) that seem to be part of a response to something I ingested. I can see that you are on an anti-histamine.

I would talk to your doctor and pharmacist. Perhaps you can try tapering off one med at a time to see if you can identify the culprit, if it is meds you are reacting to. Meds can also interact.

It also sounds like you have tinnitus on one side. I do too. Yours is still fluctuating maybe? Mine is permanent and there is no cure. I have learned to accommodate it.

I have never gotten any answers to tell you the truth. I have a lot of insurance codes from my neurologist!

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I would check the side effects of any meds you take. Neuropathy and ringing in the ears are side effects of some medications.

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Tinnitus, unusual sensations, GERD, and chest pressure are all side effects I have had from medications. You can talk to a pharmacist not only about side effects but about interactions between your meds.

You have not been on omeprazole for long. Maybe talk to your doctor about switching to Pepcid and Tums, Omeprazole is very hard to stop at some point because the body responds by making more acid, or so I have been told. Also, it seems that the omeprazole might have been (?) prescribed to deal with a side effect of another medication, so you get into a situation of having a new drug to treat the side effects of another drug, creating a chain so to speak.

Ditto, say, Adderall and Lisinopril. Does the adderall raise blood pressure? Just asking, I have no idea...

Gabapentin caused joint pain in my daughter, intolerable sensations for me, and the side effect list includes depression https://www.bing.com/search?q=gabapentin+side+effects&FORM=hlthmg&filters=IsMainlineRequery%3a%22True%22 Are you taking lamotrogine for mood? You don't have to answer (privacy) but again just asking.

You see what I am getting at. It is a bit of a tangled web. I am not at all anti-medication.. Just want to say that. But I react to just about everything. You would need medical and pharmacist help to taper off these one at a time, and need guidance on which ones you need to keep for health, what sequence to eliminate and so on.

In my experience doctors tend to say "cut in half for one week then stop." This has never worked for me. Some meds take months for me to get off. But everyone is different.

You may have some disorder but with the mix of drugs you are on it would seem prudent to first look at side effects, interactions, and whether a drug is being used to treat effects of another drug. Good luck!

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It's been awhile and I've been reading your replies and thank you for them. Otolaryngology had nothing much to say. Inner ears look OK. Unfortunately the loud pulsating tinnitus in my left ear wasn't present the day of my appointment.

Endocrinology also not much help. Doctor was very engaged and did a great job answering questions I had. My thyroid levels are normal, and he saw no endocrinological reasons for the flushing in my hands. Still did some tests: creatinine levels within normal range, tryptase, calcitonin, VIP level OK. PCP had me tested for some potential autoimmune disorders (and I know these tests aren't conclusive). SSA AB and SSB AB negative, rheumatoid factor normal, no ANA. Eosinophils still high % wise but within the normal range countwise. He suggested a dermatology consult and mentioned erythromelagia as a potential starting point. That doesn't seem to fit, as there's been little pain with the flushing, and it's not affecting my feet.

Had a long appointment with my PCP. I live alone, have significant anxiety and depression, and have no family and just a few acquaintances. So this is all quite scary. My PCP said there's not much else that can be done right now because I'm not displaying traits of any disease in particular. So, in other words, whatever is going on will just have to progress. I feel completely powerless. In terms of support, I have no idea what type of groups to look for, because I'm so confused as to what's going on- is it autoimmune, is it medication, a combination of things made worse by anxiety? Environmental? Ugh.

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@letapumamatt

It's been awhile and I've been reading your replies and thank you for them. Otolaryngology had nothing much to say. Inner ears look OK. Unfortunately the loud pulsating tinnitus in my left ear wasn't present the day of my appointment.

Endocrinology also not much help. Doctor was very engaged and did a great job answering questions I had. My thyroid levels are normal, and he saw no endocrinological reasons for the flushing in my hands. Still did some tests: creatinine levels within normal range, tryptase, calcitonin, VIP level OK. PCP had me tested for some potential autoimmune disorders (and I know these tests aren't conclusive). SSA AB and SSB AB negative, rheumatoid factor normal, no ANA. Eosinophils still high % wise but within the normal range countwise. He suggested a dermatology consult and mentioned erythromelagia as a potential starting point. That doesn't seem to fit, as there's been little pain with the flushing, and it's not affecting my feet.

Had a long appointment with my PCP. I live alone, have significant anxiety and depression, and have no family and just a few acquaintances. So this is all quite scary. My PCP said there's not much else that can be done right now because I'm not displaying traits of any disease in particular. So, in other words, whatever is going on will just have to progress. I feel completely powerless. In terms of support, I have no idea what type of groups to look for, because I'm so confused as to what's going on- is it autoimmune, is it medication, a combination of things made worse by anxiety? Environmental? Ugh.

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I have encountered something similar. I have certain diagnosed (lab, scan, biopsy confirmed) conditions to contend with, but also some that are a mystery. They could be anxiety produced. We can’t be sure. I have accepted that and openly discuss it with my doctors. Mine is health anxiety and it is challenging. I treat it with talk therapy, which really helps a lot! I have a great therapist. That, plus my daily workouts and nutritious diet has helped me a great deal. As my health improves, I hope the anxiety will too.

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