Visual Disturbance and Head Pain

[MissNeverWell]

Good morning, everyone; I hope you had a restful night.

I'm feeling alone in sorting out my symptoms, although I do have a referral to an eye doctor, which is sending my anxiety soaring through the roof.

I continue to have the head pain, which fluctuates in intensity and is intermttent, not there all the time. It is triggered by sudden movement, position and pressure, I think. What is scaring me most is the visual quirks.

This on top of an ongoing pattern that was commented on by my new GP during a review of my blood tests. I have always been surprised/concerned about the hemoglobin A1C results (it measured the sugar molecule that binds to the hemoglobin over a 2-3 month period and is an indicator of diabetes. Mine level was 5.9 (non fasting, or random as they call it). Previous results when fasting usually sat at 5.5, which I considered surprisingly high given that I don't eat processed foods or much sweets. The "at risk for diabetes" category is 6, so I'm nervous. That combined with a high creatinine/albumin ratio despite improved glomeruler filtration rate (kidneys), high magnesium level, and high level of the liver enzyme alanine aminotransferase. There isn't much room to make amendments to my diet. I eat fresh fruit and vegetables, eggs, fish, meat, chicken, so my iron levels is high, but my B12 could do with some improvement, she said. I got the doctor to weigh me after my sister belaboured the point of my weight loss - it was 71.1 lbs, which included the heavy jeans I was wearing, lol.

To complicate matters, the cap fell off my tooth last week. I geared up the courage to go to a dentist. They cemented the cap and took an x-ray, which revealed that it was unrestorative and had to come out. (I had trouble with the tooth for years - cracked, root canal, cauterized gum to make the cap fit). Of all places, it's right in the front. I'm not generally a vain person, but this is very upsetting, and another loss for me. In a way it will be a relief to have it out; I'll just have to add that tooth to the partial denture.

However, I can't deal with dentistry - neither awake or asleep: the chemicals, an extra small mouth, smells, and, in this situation, blood loss. I'm wondering if the toxic overload (or whatever is impairing the liver/kidneys) might be from the cavity over the years, and I was wondering, since I think it's the eye tooth, if that's what has been causing my vision problems. They are consulting with the senior dentist to determine whether or not to refer me to a specialist.

On the other hand, the doctor refuses to further investigate the co-existing neck, head, vision and balance symptoms, which even my audiologist told me were interconnected, and recommended referral for balance testing. She insists that the fall from a movers transport truck in 2022 would have no bearing on symptoms now, but I have had these symptoms before (minus the vision). She passes it off as fibromyalgia.

I have to trust my instincts on what my body is trying to tell me, and stand up for myself in terms of refusing certain chemicals (e.g. dilating drops instead of a more human x-ray of the back of the eye, both of which will trigger symptoms and extreme anxiety) even if I come across as noncompliant. Sometimes diagnostic procedures are more injurious than the condition they are trying to diagnose.

If, on the other hand, it is fibromyalgia related and I can hope that once the flareup subsides, my visual disturbances will settle down, then that will give me much peace of mind and I'll be able to manage the symptoms better. As it is now, I'm even anxious and avoidant of going outside, not good.

 

[JamieMarc]

Not so different from me. Medications can cause all of the problems you mentioned. For just a single example, my hga1c has been right about the same as yours for decades, and my blood glucose has also been above the normal upper limit as well. However, both are caused by certain medications that I take and are no cause for concern but rather just need to be monitored on a regular basis.

Again, that is just one example. Some of the other issues you are dealing with I also have, as I mentioned, and they are also attributable to medication.

I think that the balance test is a wonderful idea and that you should go through with that ASAP.

But also, take into consideration every single prescription medication, over the counter medication and supplement you take. You may find a cause there and you may also be able to rule those out. In addition to the balance test, that is where I would suggest you start.

Well wishes and love sending your way.

 

[MissNeverWell]

Not so different from me. Medications can cause all of the problems you mentioned. For just a single example, my hga1c has been right about the same as yours for decades, and my blood glucose has also been above the normal upper limit as well. However, both are caused by certain medications that I take and are no cause for concern but rather just need to be monitored on a regular basis.

Again, that is just one example. Some of the other issues you are dealing with I also have, as I mentioned, and they are also attributable to medication.

I think that the balance test is a wonderful idea and that you should go through with that ASAP.

But also, take into consideration every single prescription medication, over the counter medication and supplement you take. You may find a cause there and you may also be able to rule those out. In addition to the balance test, that is where I would suggest you start.

Well wishes and love sending your way.

Thank you so much for understanding. Interesting that your A1C test has been about the same level as mine for years. That's reassuring (that it hasn't developed to the next stage). I'm not on any medications or supplements, but the optician's associate asked me an intriguing question when I went to pick up my sunglasses (I changed them from non-polarized to polarized, and lightened the tint a bit - they really were too dark, and the polarization has helped a bit). He asked me if my iron level was high and if I took Vitamin C. As it turned out, my iron levels lean toward the high range, it's always been that way, except in childhood when I was anemic, so that's why I'm always surprised at the result. As it turns out, I eat a continuous variety of stewed fruit ("jam", with a little sugar added to the pot because fruit these days is as sour as vinegar). The ones I eat the most are apricots, when in I can get them, blueberries, strawberries (although I'm not fussy about them, have a strange aftertaste and the ones at the bottom of the pack tend to be moldy/mushy when I bring them home) and apples (although lately I've been eating them singly or putting them in mini loaves rather than stewing them. I also sprinkle lemon on almost everything, lol. The associate told me a very interesting chemistry fact - that Vitamin C binds to iron, so combined with my other sources of iron (meat, green vegetables), that would explain the ample level of the mineral in my blood. The fruit may be also the cause of the high A1C level, so I've cut back to just a quarter of a teaspoon of sugar when I make jam, just enough to take off the edge.

 

[JamieMarc]

@MissNeverWell Wow! A FM sufferer not on any meds or supplements! That's a first for me. LOL. I don't think that I have encountered anyone in the forum not taking something.

The fruit (and sugar) could certainly contribute to your high A1C to the best of my knowledge. Hoping that cutting back to a quarter teaspoon will make a difference. If not, I guess the only thing I can think of would be, yes, a valid concern about prediabetes. At least I know what causes my high A1C, my blood glucose, rising BUN/creatinine ratio and lowering eGFR. I sincerely hope that you find some answers. I thought for sure you must be taking meds, particularly with regard to your potentially lessening kidney and liver function. Glad your eGFR is okay, though. That's reassuring. What about alcohol? Do you drink? Any OTC meds? I'm stumped.

Please keep us informed. I am interested to learn your progress.

Hugs and love!

 

[Bob the Goalie]

Wow, looks like I am back in the lab! Terms such as glucose, creatinine, BUN etc. Resonate with the r.t. in me
My migraines begin with eye "spots", black fuzzy patches that enlarge till the acetaminophen kicks in. Hope this helps.

Bob

 

[Auriel]

@JamieMarc I love a guy that sends hugs! , also, @MissNeverWell ,I have no idea how you manage without any pain meds! (id literally be trying to climb the walls!) Hi @Bob the Goalie, welcome to our forum! ️

 

[MissNeverWell]

@MissNeverWell Wow! A FM sufferer not on any meds or supplements! That's a first for me. LOL. I don't think that I have encountered anyone in the forum not taking something.

The fruit (and sugar) could certainly contribute to your high A1C to the best of my knowledge. Hoping that cutting back to a quarter teaspoon will make a difference. If not, I guess the only thing I can think of would be, yes, a valid concern about prediabetes. At least I know what causes my high A1C, my blood glucose, rising BUN/creatinine ratio and lowering eGFR. I sincerely hope that you find some answers. I thought for sure you must be taking meds, particularly with regard to your potentially lessening kidney and liver function. Glad your eGFR is okay, though. That's reassuring. What about alcohol? Do you drink? Any OTC meds? I'm stumped.

Please keep us informed. I am interested to learn your progress.

Hugs and love!

Lol, I'm phobic of drugs - when I was a child in the hospital having my ear surgery, one nurse came by with aspirin, and I refused to take it; I argued that it wasn't Aspirin because there was no Bayer cross on it; must have been a generic form.

I'm as perplexed as you. My eyes continue to give me trouble to the point I'm almost becoming agoraphobic (afraid to go out). I miss photography/nature walks and worry that I have something seriously wrong with my eyes that affect the oculomotor nerve.

I went for the abdominal ultrasound and after a week without hearing from my doctor, I assumed it was negative. However, I got a call the other evening saying the doctor wants to review the results; nothing serious, have an appointment for August 2nd.

In the meantime, I think I said in one of the posts that I received a call for a referral to an eye doctor, but I emailed them requesting accommodation in terms of not being able to take the dilation drops, if I could have the retinal imaging instead, but no go, they didn't have one (I find that hard to believe) so I cancelled. Then I checked out two alternative routes: a chiropractor and a vision therapist.

I went for the assessment with the chiropractor earlier this week. It consisted of three types of examininations - tactile, muscle, thermal scan, and x-ray of the spine. In terms of the muscle scan (which I believe the chiropractor said referred to inflammation of the muscles around the spinal cord /neck) I had a lot of reds (severe) including at the base of the skull. The thermal scan showed some variation in temperature in the lower left back above the kidney, which I banged many against a sink many years ago. I get periods of acute ache/pain in the area the eventually subsides. I had a flare up when I packed for the three moves I made over the past few years, as well as the fall from the truck. That's why I wanted the abdominal ultrasound which looks at the liver, pancreas, stomach, intestines and kidneys. Truth be told, my internal organs felt mildly tender for a few days.

I consulted with the chiropractor of a contact from church, who drove me home on Sunday and suggested there might be a pinched nerve in a bone high up at the base of the skull that connected to the occipital lobe of the brain. (I'm not very coherent right now, but something like that). There was asymetry of the shoulders, pelvic bone, as well as neck malalignment (it should have be curved but was straight and the head was protruding out more than usual). I learned on the TV presentation in the waiting room that the atlas was the most important bone as it connected the head to the spinal chord and supported the lifting of the head, which I have trouble with. So the chiropractic assessment results gave another angle for the occipital pan and eye problems (convergence when using both eyes, dizziness with side to side movement, distortion and sometimes double vision on the periphery or at an angle). The strangest thing is that I don't feel the inflammation in my back muscles, just the left leg, which I hurt in the past and can't sleep on that side, and the back of my head and neck and behind my ear at times.

However, he wanted to start the first treatment right away after the results - big mistake. That was yesterday. He quickly went over a waiver for me to sign, skimming through it and saying he doesn't use that technique or this technique. It said if there was discomfort/pain, to apply ice to the affected area. The treatment table was a mechanized table that you stood against and it lowered you into position. That movement alone made me a bit dizzy but no big deal. The maniplations were done from under the table. They felt and sounded like jolts of mechanical parts (tsomething like two machines banging into each other is the best way I can describe it) that went through parts of your body. Think being on a transit bus and suddenly going over a pothole. At one point he had me lift my legs up alternately. I had neglected to mention to him that I have some kind of growth on my lower right leg that, when pressed, triggers a reaction in the top part of my foot. The leg has given me trouble since I slipped on the steps while boarding a bus, and I think I hurt the shin, but never did check it out, assuming it would eventually heal.

So when the treatment was over, he had me walk up and down the hall, and I was surprised at how off balance I was, and how my legs felt shaky and weak, just like when I had the flu. The right knee hurt, and the lower leg and foot felt like it was curving in, and it hurt in several areas (intersection of muscles/joints). It lasted the rest of the day and today. So I called them this morning to cancel my next appointment, saying I would not be proceeding as planned at this time. At least it will save me a ton of money. However, I worry that, like my last manual manipulation of my neck many many years ago, the pain and injury will be there for a good while. Why do I do this to myself???

The other thing I checked out is A-Ha vision clinic; had a telephone consult with the specialist, a kind of information session. It was intriguing because she works with learning disabled children/adults and those with concussion, and looks at eye functioning as opposed to acuity of vision; so things like eye tracking, visual/spatial awareness, light and colour perception, tunnelling (focusing narrowly instead of your whole visual field). However, like the chiropractor, her recommendation based on my description was light therapy, and my defences suddenly go up - playing with those different frequencies spooks me out and I don't trust them. However, it would be interesting to go for the initial assessment. I'll read up on this light therapy thing, but there are other types of remedial exercises, I'm sure.

 

[JamieMarc]

I love a guy that sends hugs!

Hugs!!! @Auriel

 

[MissNeverWell]

Update - I'm totally distraught and unable to cope. I was having double vision and other eye problems yesterday again, especially when my niece drove me from London, ON's Story Book Gardens. I decided to bite the bullet and go to Emergency after dinner. I spent the whole evening and night in the hospital. They did a short eye exam - eye pressure was fine, something else. They took a blood test to make sure there was no vascular/stroke signs and a CAT scan. The blood work was fine but the CAT scan showed a mass at the back of the brain/head that is putting pressure on the bone. The want me to do an MRI - with die - and I can't deal with that. I can't face any of this reality right now, even though my family is pressuring me to have it done.

 

[SBee]

Hello @MissNeverWell
You did the right thing by referring yourself to hospital as an emergency. No one knows our bodies better than ourselves. Unfortunately by striving to understand what our problems are, and reaching for the necessary help, it can sometimes show some scary results.

You've had a very recent shock with this mass being found and must feel very overwhelmed and scared. I would be. A lot has been going on for you.

Are You able to tell your family how you feel? It may been seen as pressuring you to undergo another procedure but maybe it's because they want what is best for you.

Of course I cannot tell you what to do, that would be wrong. But if it were me, I would want to help myself be as well as I can. I would want to know what was happening and what can be done to help me.
You are having unpleasant eye and vision symptoms, that may not just go away on their own. Can you speak with a dr and explain how you are feeling, and what to expect from an MRI, maybe ask a trusted family member to be with you for support.

I'm sorry I cannot be more help, but I do wish you well

 

[sunkacola]

the CAT scan showed a mass at the back of the brain/head that is putting pressure on the bone. The want me to do an MRI - with die - and I can't deal with that. I can't face any of this reality right now, even though my family is pressuring me to have it done.

I can fully understand that you don't feel you can cope with this right now.
I want to suggest to you, though, that it is always better to know the facts than to be in fear of the unknown.

Right now you are understandably scared because you don't know what it is and you are probably thinking of all the worst things it could be.
But you don't know.

If you go and have the MRI (which is a weird thing to go through but doesn't hurt or take long), then you will KNOW what is going on And there's every chance that it's not the worst thing! Once you know, then you can take the next steps.
Until you know, you are paralyzed and in fear.

I think @SBee is right that you might want to take a close family member with you for support. That could help a lot. And let yourself have a nice treat afterwards....go out to lunch or get ice cream, whatever will be a reward for you.

 

[MissNeverWell]

I got another call for the MRI yesterday, which tied into my siblings and partners coming over to visit me. There was an availability for 6:30 p.m. I discussed my concerns with the person who called and agreed to go, since my family could drive me over. The The IV line was the most painful part of it; I didn't realize how much that hurt; however, the die wasn't injected until the last 5 minutes of a 15 minute procedure. It felt cold but I didn't have any adverse reaction; she said that it was a mild die and most people didn't react. Nowadays, the MRI is wider and open on both ends, and they give you ear plugs and a headset (not sure if it's noise cancelling or not). So it wasn't too bad. However, waiting for and receiving the results was the worst part. They think the mass is benign, its impacting on the bone and brainstem, but it's in a tricky place and can't be sure. The ER doctor had to wait for a call from a neurosurgion to interpret the results better, but he wasn't sure either, so they want me to do more tests/appointments with an ophthalmologist/neurosurgion/internest. I am totally overwhelmed and feel I can't cope. Everything is surreal at this point. On top of it all, I committed myself (will be paid for it) to making sure one of the residents has her meals and pills until Sunday - I couldn't leave her daughter in the lurch, but my confusion/worry/anxiety makes it hard to focus, and the person has speech difficulties and some dementia. I pray I can meet her needs and not mess up, but her daughter knows the situation and is supportive. If surgery is needed, the one advantage is they would go in through the nose instead of the skull, which is less invasive and recovery time would be shorter. However, it's a very tricky spot so the risks are high, and in the meantime, my vision is really affected.