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Those of you who deal with nerve issues - is there anything that works?


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#1 creekland

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Posted 13 November 2017 - 11:18 AM

Those of you who deal with nerve issues (not nervous/anxiety issues - nerve issues - in the body), is there anything that works to help lessen them?

 

Just checking... cause I have a feeling my impulse to remove the lower left quadrant of my face from (and including) my left ear to my upper jaw probably won't make it feel better in the long run.  :glare:

 

Ibuprofen, of course, doesn't work - nor acetaminophen. Increasing salt intake (which works pretty well on other inflammation issues) doesn't seem to affect this one, nor does increase of fluid (which really is bad for the others anyway).  Caffeine doesn't help either.  Distractions do, but those are sometimes in limited supply (like today) and often require going outside - and changes in temp ultimately make it worse for a long time.

 

Any suggestions?  At this point I'm pretty willing to try practically anything that doesn't also produce fatigue (don't have that, don't want it).  Placebo effect is fine if I can get it to work.

 

I really just want to fly south (eliminating the temperature problem), but that can't happen this year for a couple more months at a minimum (sigh).



#2 Jean in Newcastle

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Posted 13 November 2017 - 11:34 AM

Gabapentin. It’s a prescription.


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#3 creekland

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Posted 13 November 2017 - 11:40 AM

Gabapentin. It’s a prescription.

 

'Tis one I have - and it causes fatigue (or so I'm told by those on it and it's listed in the side effects).

 

Then too, and perhaps more importantly (for me), it can mess with the mind (also boldly listed in the side effects).  Considering I already have to convince myself it's worth it to stick around on bad days, I don't want to risk gremlins in my mind trying to undo that.  Way too big of a risk (for me).

 

Thanks for the suggestion though.



#4 Spryte

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Posted 13 November 2017 - 11:43 AM

Gabapentin didn’t agree with my body but it works for many, and is a great idea.

There are more Rx options. I tried lots of them with varying results, and finally settled on Cymbalta when my pain was bad. I was shocked that it worked. I took it for ten years +. I’d recommend trying all other options first, as withdrawal when getting off of it is agony. Or plan to take it forever.

If it’s facial pain you are facing - do you have trigeminal neuralgia? I do, and we have tried a ton of options. Cymbalta did not help it (though it helped my other nerve pain), but I am fairly well controlled with propranolol and a mix of supplements, and just generally staying in balance and luck. My cousin, though, needed surgical intervention for hers.

Nerve pain is awful. I hope you find relief.
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#5 Spryte

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Posted 13 November 2017 - 11:45 AM

I just saw your gremlins comment. Cymbalta was fine while on it, it’s also an antidepressant so has happy side effects.

But getting off, whew, a nightmare. Talk about gremlins.

I had to wean down extraordinarily slowly.
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#6 Heigh Ho

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Posted 13 November 2017 - 11:46 AM

This will sound odd, but OTC benadryl has helped me. Psychology Today has also noted its helpful to others.  In addition, nutrition support per your usual (for me that's adding an extra methylB12 dose for a day as I may have ingested too much folic acid due to eating out, and my genetics cannot handle the enriched wheat products). 


Edited by Heigh Ho, 13 November 2017 - 11:47 AM.

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#7 slr1765

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Posted 13 November 2017 - 11:49 AM

I am trying to reduce the amount of Cymbalta I'm on right now. Hell on Earth! It does work but go in with eyes wide open.


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#8 Spryte

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Posted 13 November 2017 - 11:54 AM

I am trying to reduce the amount of Cymbalta I'm on right now. Hell on Earth! It does work but go in with eyes wide open.



Aaaagh! It took me forever to get off. My sympathies. If you need support, feel free to pm.
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#9 SparklyUnicorn

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Posted 13 November 2017 - 11:58 AM

Don't shoot me for the suggestion, but have you tried relaxation techniques?

 

I would shoot me for the suggestion.  So...LOL  But seriously I do think sometimes stuff like that can help with coping.  And it's drug free. 

 

Sorry you have to deal with that!

 

 


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#10 jdahlquist

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Posted 13 November 2017 - 12:38 PM

I took gabapentin  short term for a nerve issue.  It helped immensely.  It did make me drowsy--i took it at night so I could sleep.  Getting some good sleep made a big difference.  I did not have any other side effects

 

 


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#11 Jean in Newcastle

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Posted 13 November 2017 - 12:49 PM

Gabapentin has a very wide range of dosages from the very small (which is what I take) to the very high.  I had fatigue for two days.  Then it went away.  (Not that I care if you take it or not but just wanted to put out some more information there in case you were to talk all this over with a doctor.) 


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#12 creekland

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Posted 13 November 2017 - 12:53 PM

Gabapentin didn’t agree with my body but it works for many, and is a great idea.

There are more Rx options. I tried lots of them with varying results, and finally settled on Cymbalta when my pain was bad. I was shocked that it worked. I took it for ten years +. I’d recommend trying all other options first, as withdrawal when getting off of it is agony. Or plan to take it forever.

If it’s facial pain you are facing - do you have trigeminal neuralgia? I do, and we have tried a ton of options. Cymbalta did not help it (though it helped my other nerve pain), but I am fairly well controlled with propranolol and a mix of supplements, and just generally staying in balance and luck. My cousin, though, needed surgical intervention for hers.

Nerve pain is awful. I hope you find relief.

 

It probably has a name.  All I know is it's the trigeminal nerve, they know it's not a tumor or cyst causing it, and are willing to call it quits looking for a cause, so it's something I've generally learned to live with.  Usually there's a constant numbness feeling (so not all that bad to live with), but sometimes is pain involved - no real connections as to why that I've figured out.  I recall last winter noticing it was worse with cold, but had forgotten since then.  Now it's turned cold here again and it's either worse, my tolerance level has decreased, or my memory from last winter is poor.  Who knows?

 

Don't shoot me for the suggestion, but have you tried relaxation techniques?

 

I would shoot me for the suggestion.  So...LOL  But seriously I do think sometimes stuff like that can help with coping.  And it's drug free. 

 

Sorry you have to deal with that!

 

I hadn't planned on shooting anyone.  Not my style.  ;)  I don't actually think relaxing more will help though.  What would probably help is if I relaxed less and developed more of a Type A workaholic lifestyle as then I wouldn't have time to be sitting/relaxing and letting the feelings come to the top of my mind.  If I were at school today I'd have other things forcing me to pay attention to them.  Here at home, not so much.  Housecleaning or other chores I dislike tend to focus my mind more on it, not less.

 

I took gabapentin  short term for a nerve issue.  It helped immensely.  It did make me drowsy--i took it at night so I could sleep.  Getting some good sleep made a big difference.  I did not have any other side effects

 

Fortunately, right now, sleeping at night is not a problem.  Otherwise, I'm just way too wary of the potential for non-reversible problems in my situation.

 

Hearing about the addiction issues with Cymbalta turns me off too.  I suppose I just need to put more things in my schedule to keep my mind distracted.  I still feel like hopping in the car and just heading south.  Next year we can do that.


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#13 transientChris

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Posted 13 November 2017 - 01:01 PM

Sorry but I never had the pain in the face. If it is anything like the nerve pain I get at times, the only things I can do is distractions, prayers, and trying as much as possible not to do anything to make it worse. Mine is generally caused by the cascading spiral of not being able to control arthritis pain which leads to not being able to control muscle pain which leads to not being able to control nerve pain. It is hell when that happens. So my go to plan includes everything to lessen the arthritis and muscle spasms which includes more steroids, larger dose or any dose of muscle relaxant (I take small doses or even half. I take my usual full dose at night but can increase frequency or take full dose in daytime too), warm hear like hit showers and hearing pads, etc.
If the nerve pain is caused by something else, I would look to solve that first. Very sorry you are having such pains

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#14 scrapbookbuzz

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Posted 13 November 2017 - 01:27 PM

Sent you a PM.


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#15 creekland

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Posted 13 November 2017 - 02:56 PM

Sorry but I never had the pain in the face. If it is anything like the nerve pain I get at times, the only things I can do is distractions, prayers, and trying as much as possible not to do anything to make it worse. Mine is generally caused by the cascading spiral of not being able to control arthritis pain which leads to not being able to control muscle pain which leads to not being able to control nerve pain. It is hell when that happens. So my go to plan includes everything to lessen the arthritis and muscle spasms which includes more steroids, larger dose or any dose of muscle relaxant (I take small doses or even half. I take my usual full dose at night but can increase frequency or take full dose in daytime too), warm hear like hit showers and hearing pads, etc.
If the nerve pain is caused by something else, I would look to solve that first. Very sorry you are having such pains.

 

Can't "like" your post as that sounds awful.  Sending  :grouphug: and best wishes your way.  As far as I know, they have no idea what causes this one.  They looked for a tumor or cyst, but then nothing else 'cept Gabepentium (not sure if I spelled that correctly and too lazy to look it up).  Mostly I've just chosen to live with it and get used to it, which works most of the time when the weather isn't cold.

 

Reading this far in this thread I'm thinking I just have to keep telling myself "one more winter" and "treat" it by looking at options for southern destinations for next year.  Then too, I often remind myself that 100 years ago anyone having this wouldn't be able to do anything either, and if they could deal with it, so can I.  It fixes nothing, but can assist my mind.


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#16 cintinative

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Posted 13 November 2017 - 03:12 PM

I have an aunt with trigerminal neuralgia. If you don't have a diagnosis, that might be useful.

 

I have a neuro condition that affects my legs and feet--I have not found that any over the counter things really help it. It is aggravated by fatigue, stress, hormones and illness. So my biggest challenges involve self-care--getting enough sleep and exercise, not doing so much that I run to fatigue, and counseling/journaling/friends for the stresses of life.   I have had to accept I have more limitations than I used to, which has not been easy.

 

I am so sorry you are dealing with this. 


Edited by cintinative, 13 November 2017 - 03:26 PM.

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#17 aaplank

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Posted 13 November 2017 - 03:26 PM

Have you looked into craniosacral therapy? Even one session might help. I don't proclaim to know a whole lot about it, but it worked wonders for my babies that had mouth/jaw/face issues, one from the extensive suction device used, another for severe tongue tie.

Also, I have dealt with nerve pain from Reflex Sympathetic Dystrophy for 20 years. A TENS unit has been somewhat helpful.
Here's a link about using it on the face. https://www.activlif...m.au/face-pain/
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#18 trulycrabby

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Posted 13 November 2017 - 03:53 PM

Gabapentin can be great; but I spent a very interesting few days with my sister in the er when she suddenly stopped taking it without tapering the dosage (her orthopedist told her to stop all meds before surgery but did not give instructions to taper the gabapentin).

She had SEVERE hallucinations and basically trashed her house because she was convinced bugs were coming to get her.

Not saying don't take it it because it really helps with nerve pain. Just make sure to taper the dosage when coming off of it.

Edited by trulycrabby, 13 November 2017 - 03:54 PM.

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#19 MedicMom

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Posted 13 November 2017 - 04:56 PM

'Tis one I have - and it causes fatigue (or so I'm told by those on it and it's listed in the side effects).

Then too, and perhaps more importantly (for me), it can mess with the mind (also boldly listed in the side effects). Considering I already have to convince myself it's worth it to stick around on bad days, I don't want to risk gremlins in my mind trying to undo that. Way too big of a risk (for me).

Thanks for the suggestion though.


Truthfully the people i know who take gabapentin have found it relieved the nerve pain to the point where they no longer HAD suicidal thoughts.
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#20 Cindy in FL.

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Posted 13 November 2017 - 05:37 PM

Acupuncture might be helpful.
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#21 creekland

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Posted 13 November 2017 - 06:12 PM

I have an aunt with trigerminal neuralgia. If you don't have a diagnosis, that might be useful.

 

I have a neuro condition that affects my legs and feet--I have not found that any over the counter things really help it. It is aggravated by fatigue, stress, hormones and illness. So my biggest challenges involve self-care--getting enough sleep and exercise, not doing so much that I run to fatigue, and counseling/journaling/friends for the stresses of life.   I have had to accept I have more limitations than I used to, which has not been easy.

 

I am so sorry you are dealing with this. 

 

This part of my health "life" is part of my past at this point - at least until middle son has a few more years of med school under his belt and decent connections.  It's mainly something I need to live with until then.  I can't really see where a specific diagnosis is going to help, but it might be there on my chart anyway.  I haven't looked in well over a year.

 

I fully agree with the underlined.  I've done a combo of cutting back and pushing through learning to ignore a bit when I can't work around something.  Heading south for future winters will (hopefully) be a work around for this part.  I agree there really isn't much that can be done for the hands/feet/legs bit - not that I've found anyway, but those rarely bother me as much.  It's just become normal and my mind can overlook it.

 

I'm sorry you get to deal with similar things too.  Maybe someday there will be answers/fixes.

 

Have you looked into craniosacral therapy? Even one session might help. I don't proclaim to know a whole lot about it, but it worked wonders for my babies that had mouth/jaw/face issues, one from the extensive suction device used, another for severe tongue tie.

Also, I have dealt with nerve pain from Reflex Sympathetic Dystrophy for 20 years. A TENS unit has been somewhat helpful.
Here's a link about using it on the face. https://www.activlif...m.au/face-pain/

 

No, I haven't looked at this.  I have dinner cooking now, but will get around to looking after we finish eating.  It sounds very interesting.

 

Truthfully the people i know who take gabapentin have found it relieved the nerve pain to the point where they no longer HAD suicidal thoughts.

 

'Taint the nerve problems that get me there though - not yet anyway.  They're just aggravating.  There are other issues.  Without the extra from the cold, this one is pretty minor.  It doesn't affect anything I can actually do - even when bad - hence, actually doing things instead of sitting around letting my brain drift onto "whatever" is better.  I'm just not inclined to be busy all the time.  I'm solidly Type B with a touch of procrastination tossed in for good measure.

 

Acupuncture might be helpful.

 

That's a thought I hadn't considered.  Maybe... thanks for the suggestion!



#22 aaplank

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Posted 13 November 2017 - 06:41 PM

Here is a link if your interested in craniosacral therapy.
http://lotus-centre....gia-case-study/

Also Google has some links related to acupuncture and massage
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#23 Cindy in FL.

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Posted 13 November 2017 - 08:04 PM

The place that I go to has the craniosacral therapy, acupuncture, and massage. The craniosacral therapy makes me cry for some reason (not pain related, but an emotional response).

Here is a link if your interested in craniosacral therapy.
http://lotus-centre....gia-case-study/

Also Google has some links related to acupuncture and massage


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#24 aaplank

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Posted 13 November 2017 - 09:19 PM

The place that I go to has the craniosacral therapy, acupuncture, and massage. The craniosacral therapy makes me cry for some reason (not pain related, but an emotional response).


Interesting! I cried once during a face and neck massage. I couldn't control it. The massage therapist said it happens often. I felt so vulnerable and exposed.
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#25 dsmith

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Posted 13 November 2017 - 10:35 PM

I suffered for 2 years with trigeminal nerve pain. Nothing would help it. I didn't have numbness with it, just very severe sharp pain triggered by cold weather, cold foods, chewing, yawning, brushing my teeth... It suddenly went away and hasn't been back. Every once in a while I feel a twinge of it, but it never fully develops into the pain I had. My doctor mentioned that some people can have this as a lifelong issue while others have it for only a short period, but that it can also go into remission for years at a time and come back. My neurologist thinks it was probably MS related trigeminal neuralgia and may come back. My current nerve issues aren't quite painful (numbness and buzzing sensations) and sometimes Xanax will help with the buzzing or at least with my ability to tolerate it, lol. 

 

I've never heard of increasing salt intake for inflammation issues. I always thought it was the opposite. I've been trying to reduce salt intake after reading the negative effect salt can have on MS. 



#26 creekland

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Posted 13 November 2017 - 10:58 PM

Here is a link if your interested in craniosacral therapy.
http://lotus-centre....gia-case-study/

Also Google has some links related to acupuncture and massage

 

Ok, I looked up the Tens Unit and this link.  The Tens Unit looks interesting.  I wish there were a way to try it first to see if it worked before actually buying one.

 

With the link - esp the case study - there's no way mine is as bad as what that lady had.  I don't get headaches from this, or eyeaches or similar.  Most of the time it's just a constant numb feeling from the upper jaw to my left ear - very similar to returning from the dentist waiting for the sedative to wear off, except it doesn't wear off and I can still feel touches, etc.  It's annoying, but not painful.  Sometimes the ear and teeth in the upper jaw get painful and I don't know why.  It makes me want to dig out the ear and try flossing the teeth, but those won't work - though I'm sure I've scratched the inside of my ear enough at times just checking.  ;)

 

With the recent cold temps (<40, or windy outside) the ear gets painful too - similar to how a tooth would if the nerve were exposed to cold - except it takes a little longer to feel at first, then seems to get numb to (or used to) the cold and isn't so bad, but when I return inside it "thaws" (again, coming on slowly) and stays annoyingly painful for a bit of time - not days, weeks, or months though - just hours.

 

With winter just starting and my liking to (and needing to) be active outdoors, this is going to be problematic.  I had resisted earmuffs (or hats) - fashion reasons - but sitting here now feeling it after coming in from an evening walk and knowing a good part of this winter is going to be spent even further north where below zero temps are common, I'm probably going to be purchasing a set tomorrow to see if they make a difference or not.

 

My guess for the cause is a blood vessel pressing against the nerve - hard enough to make the numbness part constant, but with enough variety for the extra pain at times. It often happens the same time other inflammation issues (also in the head) are problematic, but those will usually respond to extra salt and less fluid intake - something I also try to keep doing on a daily basis (hoping the kidneys can handle it) in order to keep life feeling ok.  This one won't respond to that. I haven't figure out what makes it better when it's bad, but it's not often enough to be a serious issue (like in the case study), though the numbness part never goes away.

 

I'm not really sure why the sensitivity to hot/cold happens.  Something is too close to the skin without enough insulation I suppose.  That one I'm hoping I can work around somehow.  Moving south for the winter next year should help, but that's next year.  I have to get through this one first.

 

Except for the cold/winter part, this issue is not one I'm terribly concerned about as I'm used to it enough for it to rarely be bothersome.  It's mostly a "bother" when other things have me mentally down - a straw adding to the bricks when that happens.  Everything is a straw adding to the bricks when that happens, but fortunately, I've been through it enough to know that bad days get followed by good ones so I just need to wait it out.  But I don't need gremlins messing with that mindset - esp to fix a small part of the big picture.



#27 dsmith

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Posted 14 November 2017 - 12:29 AM

Ok, I looked up the Tens Unit and this link.  The Tens Unit looks interesting.  I wish there were a way to try it first to see if it worked before actually buying one.

 

With the link - esp the case study - there's no way mine is as bad as what that lady had.  I don't get headaches from this, or eyeaches or similar.  Most of the time it's just a constant numb feeling from the upper jaw to my left ear - very similar to returning from the dentist waiting for the sedative to wear off, except it doesn't wear off and I can still feel touches, etc.  It's annoying, but not painful.  Sometimes the ear and teeth in the upper jaw get painful and I don't know why.  It makes me want to dig out the ear and try flossing the teeth, but those won't work - though I'm sure I've scratched the inside of my ear enough at times just checking.  ;)

 

With the recent cold temps (<40, or windy outside) the ear gets painful too - similar to how a tooth would if the nerve were exposed to cold - except it takes a little longer to feel at first, then seems to get numb to (or used to) the cold and isn't so bad, but when I return inside it "thaws" (again, coming on slowly) and stays annoyingly painful for a bit of time - not days, weeks, or months though - just hours.

 

With winter just starting and my liking to (and needing to) be active outdoors, this is going to be problematic.  I had resisted earmuffs (or hats) - fashion reasons - but sitting here now feeling it after coming in from an evening walk and knowing a good part of this winter is going to be spent even further north where below zero temps are common, I'm probably going to be purchasing a set tomorrow to see if they make a difference or not.

 

My guess for the cause is a blood vessel pressing against the nerve - hard enough to make the numbness part constant, but with enough variety for the extra pain at times. It often happens the same time other inflammation issues (also in the head) are problematic, but those will usually respond to extra salt and less fluid intake - something I also try to keep doing on a daily basis (hoping the kidneys can handle it) in order to keep life feeling ok.  This one won't respond to that. I haven't figure out what makes it better when it's bad, but it's not often enough to be a serious issue (like in the case study), though the numbness part never goes away.

 

I'm not really sure why the sensitivity to hot/cold happens.  Something is too close to the skin without enough insulation I suppose.  That one I'm hoping I can work around somehow.  Moving south for the winter next year should help, but that's next year.  I have to get through this one first.

 

Except for the cold/winter part, this issue is not one I'm terribly concerned about as I'm used to it enough for it to rarely be bothersome.  It's mostly a "bother" when other things have me mentally down - a straw adding to the bricks when that happens.  Everything is a straw adding to the bricks when that happens, but fortunately, I've been through it enough to know that bad days get followed by good ones so I just need to wait it out.  But I don't need gremlins messing with that mindset - esp to fix a small part of the big picture.

 

I would think that the extra salt could make the blood vessels dilate, which could actually end up exacerbating the problem. Have you had an MRI or an MRA? It may show if something is pressing on the nerve.


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#28 Heigh Ho

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Posted 14 November 2017 - 07:39 AM

Could it be air pressure, rather than hot/cold? This air mass here now is very moist yet cold, and people are complaining of headaches.  Mold is up too, so some of it may be allergy.


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#29 creekland

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Posted 14 November 2017 - 08:14 AM

I would think that the extra salt could make the blood vessels dilate, which could actually end up exacerbating the problem. Have you had an MRI or an MRA? It may show if something is pressing on the nerve.

 

Interesting.  I'll have to pay attention to this particular problem with salt/fluid to see if I notice a change.  Even if I do though, the other stuff way outweighs it in magnitude and I'm 100% positive of the connection with that.  It's predictable and it happens when I'm not paying attention to it.  This one, being a smaller issue, I don't usually pay attention to - only when it hurts and even then, mostly when I'm not kept busy with other "brain exercising" things.  General unloved, mindless busywork (like housework) sure doesn't help.

 

MRIs, yes.  It's how they keep track of the brain tumor I have, though it's been a couple years now (I think) since the last one.  That tumor is fixed and just on "watch" mode. 

 

MRA?  Fancy you should ask.  It's what I thought would happen (seemed rather obvious with symptoms actually) and specifically asked for due to hearing my pulse and nothing showing up on the MRI (which was a good thing, because another tumor was what was originally suspected!).  I was told there was no need - and this at Johns Hopkins, so hardly a small local hospital without much experience.  Money was not an issue.  It's merely their lack of belief that these things are going on. ("Try to reduce stress!")  My guess is it's too rare except when with the "right" specialist and if one can't get past the gatekeeper to get a referral, one can't get to the right specialist.  I can't "fix" that.

 

Well... 'tis my hope with middle son in med school still.  I don't have to convince him.  He just needs to gain more information, then contacts who will take his word for it (since he can't actually investigate himself due to our relationship).

 

It seems it's pretty common for doctors to disbelieve things they can't see, esp when the "most likely" cause doesn't turn up in a test, but even without that.  I went to an ENT (twice - their insistence) to check to be sure it's not an ear issue.  The first one took one look at my chart and casually mentioned my vision issues due to the brain tumor outright stating, "I don't see any problem with your vision looking at you."  I'll admit I wasn't quite sure how to respond - it wasn't even what I was there to see him for.  My mind was just glad the first eye doctor I went to see didn't say that.  At JH, plenty of med school students were brought in to see what to look for, but I suppose as the years progress they don't actually see it and forget?

 

Then too, I've seen several folks at the hospital now (usually with my mom, but some with my own things) and I "get" why stress is an issue.  It'd be my first guess too with many folks I've just casually seen - not knowing who they are.

 

It's all part of why I chose to back out of even trying to continue to pursue getting that stuff fixed.  It's very much a "not likely to win" situation and that is what causes me stress.  It's easier for my body just to figure out how to deal with the issues than it is to deal with others in charge who aren't going to believe what I say anyway.

 

At this point I'm only going to see a doctor about things that are 100% obvious to everyone, or close to it.

 

Even that doesn't always work.  I have painful lumps under my left armpit that literally just appeared two years ago now.  They were investigated and a mammogram + ultrasound found nothing of concern (a good thing).  So... I was told they've always been there and aren't an issue.  I can believe they aren't an issue (aside from the pain I put up with), but no, both hubby and I know they haven't always been there and the pain they caused at the beginning (much more intense than what's there now) let me know exactly when they appeared.  It would actually fit into the abnormal blood vessels growing/appearing theory - and that one is known to have happened with a lump removed from my finger - plus I have a vein in my hand that anyone can feel the pulse in - another thing that came on ONE day (at least, one day of intense pain from it when it started).

 

In my mind there's a good possibility it's all connected.  What happened in the hand could happen elsewhere and not show up on the tests they did.  In their mind I'm a stressed out wacko with weird theories.  I'll admit my theory might not be correct, but it sure seems to fit what I KNOW is there and to me, would be worth checking for.  It's not to them.  They get to call the shots.

 

That's the total impasse in case you were curious.  Well, I know I've left out more details here and there, but that's a summary.  It's a long enough post anyway and getting off topic.



#30 creekland

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Posted 14 November 2017 - 08:16 AM

Could it be air pressure, rather than hot/cold? This air mass here now is very moist yet cold, and people are complaining of headaches.  Mold is up too, so some of it may be allergy.

 

Maybe, for the unknown times.  I've never paid attention.  Headaches aren't part of it fortunately.  Just nerve pain.

 

I'm pretty positive hot/cold matter - as does wind.



#31 8circles

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Posted 14 November 2017 - 08:50 AM

I don't have any personal experience.

 

Just letting you know that Plexus has a product that is supposed to help with nerve pain. It's called Plexus Nerve. 


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#32 GailV

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Posted 14 November 2017 - 08:59 AM

Dh will probably have suggestions.  He deals with a lot of issues, particularly in his foot and leg.  He's in Mexico this week, and communication is pretty brief.

 

Things I can tell you without him here --

 

- He takes glutathione -- Tri-Fortify brand. 

 

- He follows a low inflammatory diet.  He's extremely into this, and rarely strays.  Lots of vegetables, certain fruits, rarely any grain. I make bone broth, which he has almost daily. 

 

- He's very into lymph movement right now. Coincidentally, dd was learning about lymph in her dual enrollment Anatomy & Physiology class this semester, and her main takeaway was along the lines of "yeah, we really don't know much about that." For example, I don't remember learning about brain lymph, but now it's apparently accepted as existing.  Which doesn't help you, I realize, but it could have something to do with whether or not massage does anything for you.  Along these lines, dh is currently into fairly invasive massage -- things he normally wouldn't be open to doing, like a psoas release -- because it actually helps.


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#33 GailV

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Posted 14 November 2017 - 09:08 AM

Don't shoot me for the suggestion, but have you tried relaxation techniques?

 

I would shoot me for the suggestion.  So...LOL  But seriously I do think sometimes stuff like that can help with coping.  And it's drug free. 

 

Sorry you have to deal with that!

 

Oh, that makes me think:  How about EFT "tapping", which is based on using the piezoelectric charges produced by tapping on acupuncture points.  It's used a lot for relaxation, but people also use it for pain relief.  There's a huge swathe of weirdness to slog through if you look it up, but you can find stories about people using it to help with  dealing with various neuropathy.


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#34 creekland

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Posted 14 November 2017 - 06:47 PM

I don't have any personal experience.

 

Just letting you know that Plexus has a product that is supposed to help with nerve pain. It's called Plexus Nerve. 

 

I just spent some time trying to find studies on this product with no luck.  There are plenty of testimonials and promotion from the company, but do you have any idea if there have been non-biased studies?  I put more faith in those than testimonials.  

 

Oh, that makes me think:  How about EFT "tapping", which is based on using the piezoelectric charges produced by tapping on acupuncture points.  It's used a lot for relaxation, but people also use it for pain relief.  There's a huge swathe of weirdness to slog through if you look it up, but you can find stories about people using it to help with  dealing with various neuropathy.

 

I'm definitely going to have to look this up too, but a little later or tomorrow when I have more time.



#35 creekland

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Posted 14 November 2017 - 07:06 PM

Dh will probably have suggestions.  He deals with a lot of issues, particularly in his foot and leg.  He's in Mexico this week, and communication is pretty brief.

 

Things I can tell you without him here --

 

- He takes glutathione -- Tri-Fortify brand. 

 

- He follows a low inflammatory diet.  He's extremely into this, and rarely strays.  Lots of vegetables, certain fruits, rarely any grain. I make bone broth, which he has almost daily. 

 

- He's very into lymph movement right now. Coincidentally, dd was learning about lymph in her dual enrollment Anatomy & Physiology class this semester, and her main takeaway was along the lines of "yeah, we really don't know much about that." For example, I don't remember learning about brain lymph, but now it's apparently accepted as existing.  Which doesn't help you, I realize, but it could have something to do with whether or not massage does anything for you.  Along these lines, dh is currently into fairly invasive massage -- things he normally wouldn't be open to doing, like a psoas release -- because it actually helps.

 

Supplementing glutathione orally doesn't get good reviews TBH - too easily broken down before it gets where it's needed.

 

https://examine.com/...ts/glutathione/

 

A healthy diet is something we usually do.  I can't say we rarely stray since that happens when we travel, but I also haven't noticed any difference from diet changes other than when sodium decreases too much (which is easy to happen when we're at home eating mostly veggies and fruits - some meat - a little bit in grains).  Since most of my blood numbers are quite good (cholesterol being the only exception that comes to mind), I think I mostly get what my body needs.  I could definitely be wrong, of course.

 

I'll have to ask middle son if he's studied brain lymph yet or not (he had more brain info from his undergrad, so might have gotten some there).  Or... if I end up with free time tomorrow, I'll see what I find on google.

 

I might also have to spend some time googling for studies done that show if any supplements are effective.  For whatever reason, I hadn't thought of doing that before.  I appreciate the direction you've given!  (Even the site I linked gave a possible alternative for part of it, so I can look that up too.)



#36 Heigh Ho

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Posted 14 November 2017 - 08:15 PM

any genetic clues?



#37 GailV

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Posted 14 November 2017 - 08:43 PM

Supplementing glutathione orally doesn't get good reviews TBH - too easily broken down before it gets where it's needed.

 

https://examine.com/...ts/glutathione/

 

 

 

I think that's why he uses Tri-Fortify -- it's liposomal, so apparently can actually be absorbed.  Or else it's an expensive placebo (I'm certainly not ruling that out).  Either way, it works for him.

 

As for brain lymph, that was just random musing about how little we know about lymph.  I remember back when I thought we actually knew how the body works ... turns out there are all sorts of structures no one has noticed or thought to study.  Of course, having the type of kids who find cadaver labs endlessly fascinating means this is constantly discussed here, to the point that I've started to forget that other people might not consider this normal/interesting conversation. 


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#38 creekland

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Posted 14 November 2017 - 09:39 PM

any genetic clues?

 

Only that my mom also has different reactions than what is "typical" for most things making it difficult to figure out what's wrong.  'Tis not the best genetic factor to inherit.

 

Relating specifically to this, no.

 

I think that's why he uses Tri-Fortify -- it's liposomal, so apparently can actually be absorbed.  Or else it's an expensive placebo (I'm certainly not ruling that out).  Either way, it works for him.

 

As for brain lymph, that was just random musing about how little we know about lymph.  I remember back when I thought we actually knew how the body works ... turns out there are all sorts of structures no one has noticed or thought to study.  Of course, having the type of kids who find cadaver labs endlessly fascinating means this is constantly discussed here, to the point that I've started to forget that other people might not consider this normal/interesting conversation. 

 

Pretty much anything here can be normal conversation.  ;)  My medical knowledge is pretty limited though.  I can tell you (anyone) biological things - how cells use/get oxygen or calcium or whatever plus how systems work (all Bio info) and I'm fairly up on what's needed to keep the body healthy and functioning well, but not specific anatomy or medical knowledge.  My degree specialty is Physics and Psychology.  I keep up with how the brain is wired to think (Cognitive Science), but not so much the physical end of it.  It's easy for me to look up things and understand what I'm reading after getting key words, but not knowing which key words to look up.  That's a big part of what I use the Hive for at the moment.

 

It will be very helpful to have middle son "trained" in the medical world.  At his med school they are already working on diagnosing problems (created problems from previous real cases if I understand him correctly).  The lad just had one last week that he eagerly called us about afterward.  He was the equivalent of the dissenting opinion eerily similar to the court case in Twelve Angry Men.  Everyone in his group was disagreeing with him and shooting his thoughts down.  Guess who was right?  It was a great confidence booster for him.  There's a reason I'm more or less treading water until he fills in his knowledge and connections.  The lad already knows my life and where I'm coming from - a trust bond between us - and he's incredibly good at solving problems even when he has to think outside the box.

 

I don't think what I have is deadly (barring mental issues from it) or I'd be dead already.  I think it's something functional/mechanical? that is off and perhaps could be fixed if it could be figured out.  It shouldn't be a major organ or various blood numbers would be off.  They aren't.  It is progressive, but slowly, so if I can figure out how to make things work long enough, he might figure out answers for me.  Time will tell.

 

I know there are lung issues (a different thread), but I'm pretty sure that's also a totally different issue - still not explained, but hopefully will be soon.  That one has tripped over the bar I've set for being obvious to everyone, so there shouldn't be problems getting it investigated, esp after the results of lung testing come back at the end of this month.  The fact that they are willing to test it is already a plus (totally different doctor than before and the mom of a student at school, so maybe I can overcome the disbelief factor as long as I'm careful with what I say/share).

 

There's a tiny section of my thoughts that admittedly wonder if it's all due to more tumors and/or any sort of cancer, but I know that's just because I've become way too familiar with my mom's (cancer) experience this past year - and how all of her issues were "stress" too, up until they weren't (her cancer - esophageal - is one she shouldn't have based upon stats of "who gets this cancer").  But again, if mine were, I think it'd have already done my body in.  My issues started well before her most notable ones did.  I don't lie awake thinking about it.  There are just times I wonder.  Most likely it's something else.  I'd place my bets with vascular - not cardio - just vascular - maybe lymph included, esp the more recent parts associated with the progressiveness.  



#39 8circles

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Posted 14 November 2017 - 10:42 PM

I just spent some time trying to find studies on this product with no luck.  There are plenty of testimonials and promotion from the company, but do you have any idea if there have been non-biased studies?  I put more faith in those than testimonials.  

 

 

I don't and I agree, I feel the same. If I have any luck with more info, I'll let you know.


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#40 creekland

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Posted 15 November 2017 - 08:52 AM

I don't and I agree, I feel the same. If I have any luck with more info, I'll let you know.

 

I guess that's my problem with placebo effect possibilities.  My science/data mind needs details instead of blindly trusting (anyone) before starting something.  The two don't really go hand in hand.

 

Fortunately, yesterday wasn't a problem.  I didn't go outside until it was warmer and it seems to take <40 degree temps or wind to cause the problem.  When there isn't a continual reminder, my mind easily forgets about things.  That's a negative if it's something I'm supposed to do, but pretty useful with these types of health issues.

 

Snowbirding is continuing to sound like a good solution for the future.  Toughing it out seems to be what's going to happen this year, but even that's easier to do with a light at the end of the tunnel.

 

Of course, I'm saying that now when it isn't a problem.  Next time I'm sitting here feeling it linger and getting frustrated, I'll look more carefully at those supplements and see if there are legitimate studies or suggestions!


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#41 Paige

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Posted 15 November 2017 - 09:31 AM

Gabapentin. It’s a prescription.


Sent from my iPhone using Tapatalk

 

This is what they gave my DD after her neuro surgery. The doctors said it will not work well alone, however. I know DD's situation is probably far different from yours, but we had to combine gabapentin with fairly aggressive desensitization.

 

If your issue is nerve pain and hyper sensitivity, you could try taking the gababpentin for about a week, but about 20min after you take it, work on desensitization of the affected area. We were told to begin with having DD tolerate light touches such as feathers, a tea towel rubbed across the area, or a fuzzy sock, and work up to being able to tolerate rough touches and pressure such as rubbing a wire hair brush and other irritating and scratchy things. DD was supposed to do this 2x a day while watching tv or something (to distract her) and work on desensitization for about 25-30min at a time.

 

DD has no issues anymore with hypersensitivity, but I hear frequent complaints about it as a long term side effect of the procedure from parents of other kids who were not given (or did not follow) the desensitization instructions. 


Edited by Paige, 15 November 2017 - 09:32 AM.

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#42 prairiewindmomma

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Posted 15 November 2017 - 11:05 AM

Supplementing glutathione orally doesn't get good reviews TBH - too easily broken down before it gets where it's needed.

 

https://examine.com/...ts/glutathione/

 

A healthy diet is something we usually do.  I can't say we rarely stray since that happens when we travel, but I also haven't noticed any difference from diet changes other than when sodium decreases too much (which is easy to happen when we're at home eating mostly veggies and fruits - some meat - a little bit in grains).  Since most of my blood numbers are quite good (cholesterol being the only exception that comes to mind), I think I mostly get what my body needs.  I could definitely be wrong, of course.

 

I'll have to ask middle son if he's studied brain lymph yet or not (he had more brain info from his undergrad, so might have gotten some there).  Or... if I end up with free time tomorrow, I'll see what I find on google.

 

I might also have to spend some time googling for studies done that show if any supplements are effective.  For whatever reason, I hadn't thought of doing that before.  I appreciate the direction you've given!  (Even the site I linked gave a possible alternative for part of it, so I can look that up too.)

 

Brain lymph is a real thing.  https://www.nih.gov/...-nervous-system

 

trigeminal neuralgia is also a real thing https://www.ninds.ni...lgia-Fact-Sheet

 

I kinda wonder about giving valproic acid or the like a go.  It's cheap, easily, etc. The trigeminal neuralgia link shows some other treatment options. You might research your way through those.

 

My dd had most of her cranial nerves affected by her BT. I think most neuros are poorly trained on post-BT management.  And, frankly, from what you've described of your care at JH, I'd go somewhere else....especially if things are bad enough that you're thinking about leaving.


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#43 Jean in Newcastle

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Posted 15 November 2017 - 12:00 PM

This is what they gave my DD after her neuro surgery. The doctors said it will not work well alone, however. I know DD's situation is probably far different from yours, but we had to combine gabapentin with fairly aggressive desensitization.

If your issue is nerve pain and hyper sensitivity, you could try taking the gababpentin for about a week, but about 20min after you take it, work on desensitization of the affected area. We were told to begin with having DD tolerate light touches such as feathers, a tea towel rubbed across the area, or a fuzzy sock, and work up to being able to tolerate rough touches and pressure such as rubbing a wire hair brush and other irritating and scratchy things. DD was supposed to do this 2x a day while watching tv or something (to distract her) and work on desensitization for about 25-30min at a time.

DD has no issues anymore with hypersensitivity, but I hear frequent complaints about it as a long term side effect of the procedure from parents of other kids who were not given (or did not follow) the desensitization instructions.


Very interesting! I had never heard about that kind of desensitization. But you are right, my situation is different and involves the muscles as much as the nerves. But I’m going to read more about this.
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#44 creekland

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Posted 15 November 2017 - 12:08 PM

This is what they gave my DD after her neuro surgery. The doctors said it will not work well alone, however. I know DD's situation is probably far different from yours, but we had to combine gabapentin with fairly aggressive desensitization.

 

If your issue is nerve pain and hyper sensitivity, you could try taking the gababpentin for about a week, but about 20min after you take it, work on desensitization of the affected area. We were told to begin with having DD tolerate light touches such as feathers, a tea towel rubbed across the area, or a fuzzy sock, and work up to being able to tolerate rough touches and pressure such as rubbing a wire hair brush and other irritating and scratchy things. DD was supposed to do this 2x a day while watching tv or something (to distract her) and work on desensitization for about 25-30min at a time.

 

DD has no issues anymore with hypersensitivity, but I hear frequent complaints about it as a long term side effect of the procedure from parents of other kids who were not given (or did not follow) the desensitization instructions. 

 

Desensitization definitely helps with anything IMO.  It's part of why the constant things are easier to handle than the variable things.  One gets used to them.  (This, of course, depends upon the constant things not being super bad as with the case study in the previous link.)  99% of the time I think nothing of the constant things even though each one of them bugged me a bit in the beginning - bugging merely because they were new (and new = scary across our species when it deals with health things).  Pain adds another dimension, but even with that, when one "knows the routine" it's usually easier to handle - and nerves, of course, can get deadened sometimes.

 

All that said, I'm not quite sure how I'd desensitize the inside of my ear.  Temperature varies.  Winter (up north) brings cold - sometimes - it's always warm inside.

 

I suspect I'll get used to the routine of it all though.  That's probably what happened last winter.  Summer, of course, allowed me to totally forget about it until its happening again dusted off some memory neurons.  I survived.  I'm not worried about some nerve pain ending my life.  I really am not going to add the meds though as I'd give high odds to gremlins messing with my mind when they shouldn't and I'm not willing to risk the outcome of that.  My whole philosophy of "end of life" is "end it when the quality I want isn't there."  That's not changing.  I don't need gremlins moving the bar where it shouldn't be.  There's enough quality of life left yet.  ;)

 

Some time ago youngest asked if I'd be willing to try the meds if I thought QOL wasn't there any longer.  I'm honestly not sure.  I've thought about that again with reading the case study and that young lady's experience.  But my conclusion is pretty much to cross that bridge when and if I ever get there.  I might not.  Even then, I don't really think it will be nerve issues that get me there (though who knows with the symptoms from that case study).  That's what those meds are supposed to fix - not the rest of the stuff.

 

Brain lymph is a real thing.  https://www.nih.gov/...-nervous-system

 

trigeminal neuralgia is also a real thing https://www.ninds.ni...lgia-Fact-Sheet

 

I kinda wonder about giving valproic acid or the like a go.  It's cheap, easily, etc. The trigeminal neuralgia link shows some other treatment options. You might research your way through those.

 

My dd had most of her cranial nerves affected by her BT. I think most neuros are poorly trained on post-BT management.  And, frankly, from what you've described of your care at JH, I'd go somewhere else....especially if things are bad enough that you're thinking about leaving.

 

I'll need to look through your links later.  In about 15 minutes I'm about to go outside and get some stuff done with the ponies and yard (warmer part of the day).

 

JH has surprised me to a large extent.  I'm not exactly sure how they get their Top 5 ranking, but I have very little medical experience to compare.  Mostly I've kept myself healthy and there just haven't been issues of any sort prior to the BT.  Other than what's been going on since (and that deal with the lungs), there still aren't.

 

I was very pleased with JH's ability to figure out the tumor and deal with it in a way that worked.  Everyone was friendly, etc.  No issues (aside from billing!  Their billing is awful compared to other places I deal with!!!  I haven't been there in almost 2 years now and still got a "new" bill in to pay a week ago!).  But that aside, everything seemed kind of text book as far as I knew.  No surprises, pretty darn good experience considering it all.  But afterward?  That issue is done (yea!).  The doctor dealing with that issue is done with it (unless my vision issues get worse suggesting the tumor is back). Anything else is outside his specialty.  I needed to find a primary care person willing to take over all the rest.  I've tried two (one local to me, one there), both of whom I'm positive are quite good with normal issues and were good at getting the usual cause for the side effects checked out (well, the side effects they believed in anyway).  It's the next step where things ended.  I saw more plausible possibilities (using reliable sources) and they didn't.  They're in charge.  They win.  I have walked away since I'm not going to beg or cry or whatever else would be required.

 

I'm back to taking care of myself for the most part (I can keep up on various blood numbers and BP, etc).  I've got my new bar set to utilize doctors when I'm certain they'll be able to see what is wrong (broken bones, bleeding, infections, vaccine updates needed, and hopefully the more recent lung issue or similar things).  I'll see how that goes.  There are definitely things I question things not generally written on here in any thread - like driving home from the post office this past week, putting the back of my head up against the headrest pretty lightly, and getting electric fence type sensations causing me to wonder if I should immediately pull over or what.  Fortunately, they went away as quickly as they came, but it definitely got my attention.  Being "me" I had to test it again once I reached the safety of my lane (vs open road).  It didn't happen again.  It has happened before 2 or 3 times, but certainly not with any regularity or predictability.  Get something like that regularly and life certainly could change.  I have no idea what I would do TBH.  But for now, I just watch and try to figure out if I can predict things, change them, and learn to live with them.  (That's not one of them because it happens so rarely.  I do that with other things that are more common.  That's just the latest WTH moment - one I hope doesn't start repeating itself.)

 

And now... I'm 5 minutes late heading outside!  Back later. There are things that need doing since I'm not at school working today.  :coolgleamA:



#45 creekland

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Posted 15 November 2017 - 01:31 PM

Just taking a quick break (from the Great Outdoors and doing my regular routine out there) to hop on here and update just a tad.  The nerve issue in this thread is not going to be that big of a deal (yeah, I know I'm saying that on a relatively warm day, so no "extra" annoyance involved).  When it bugs me again, I'll look up the supplements and see if anything shows promise from independent studies, then decide if they're worth trying.  But in any event, it's just a nerve issue and isn't a game changer.  I have next year to look forward to and that should minimize the problem.

 

What's obvious (now) to me is my lung issue has the potential to be the game changer.  I detailed this one a little more in this thread for the curious (no need to have to be curious, of course! - just listed for anyone who is):

 

http://forums.welltr...dical-question/

 

That one is affecting the quality of life (though not at a bad level at this point - so none of y'all should worry if your views about the end of life differ from mine), but if one skips to the end of the thread, I am deferring to those with more knowledge than I have on it (aka doctors).  Since lung issues are relatively common, I am fully expecting them to be able to (and willing to) figure it out for me - hopefully with some fixes to resume life on it's normal (for me) track.  Not being able to do things I'm used to doing is totally different than just being annoyed by nerve pain that in actuality doesn't affect what I can do.

 

On a side note, 'tis interesting how that which bothers us, or me anyway, (enough to start a thread) is the one calling for attention at the time, but having typed out a bit on the nerve issue, I definitely have better perspective of the bigger picture right now.  I'm thinking that's a plus.

 

Thanks all for the suggestions and links - and now I have to resume my outdoor activities because no one else is around to do them!



#46 Heigh Ho

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Posted 15 November 2017 - 02:40 PM

Only that my mom also has different reactions than what is "typical" for most things making it difficult to figure out what's wrong.  'Tis not the best genetic factor to inherit.

 

Relating specifically to this, no.

 

 

SInce you both have odd issues, perhaps genetic testing on both would be informative.  23andme right now has a good price for two ancestry kits, that will give you the genetic data you can process on other sites.They aren't the only game in town and there are free places. 

 

In my case, the doctor got down to pancreatic tumor or genetic polymorphisms.  23andme was far cheaper than going thru medical lab or exploratory surgery, and confirmed the polymorphisms. Too late to get my parents' data; but mine will help the next generation dodge the onset of my very very preventable condition. 


Edited by Heigh Ho, 15 November 2017 - 02:41 PM.

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#47 creekland

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Posted 15 November 2017 - 05:25 PM

SInce you both have odd issues, perhaps genetic testing on both would be informative.  23andme right now has a good price for two ancestry kits, that will give you the genetic data you can process on other sites.They aren't the only game in town and there are free places. 

 

In my case, the doctor got down to pancreatic tumor or genetic polymorphisms.  23andme was far cheaper than going thru medical lab or exploratory surgery, and confirmed the polymorphisms. Too late to get my parents' data; but mine will help the next generation dodge the onset of my very very preventable condition. 

 

Hmm, that's an idea for decent Christmas presents this year.  I was having difficulty coming up with ideas, but I know my dad is interested and I'm always curious about things.  I wonder what my mom will think...



#48 abacus2

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Posted 15 November 2017 - 09:05 PM

My husband was suffering similar pain a couple years ago. He finally found relief with physical therapy. They tried several different things before finding exercises which help. Now as long as he maintains his exercises, he is doing well. We were shocked that physical therapy helped.


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#49 Sandwalker

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Posted 15 November 2017 - 09:22 PM

Those of you who deal with nerve issues (not nervous/anxiety issues - nerve issues - in the body), is there anything that works to help lessen them?

Just checking... cause I have a feeling my impulse to remove the lower left quadrant of my face from (and including) my left ear to my upper jaw probably won't make it feel better in the long run. :glare:

Ibuprofen, of course, doesn't work - nor acetaminophen. Increasing salt intake (which works pretty well on other inflammation issues) doesn't seem to affect this one, nor does increase of fluid (which really is bad for the others anyway). Caffeine doesn't help either. Distractions do, but those are sometimes in limited supply (like today) and often require going outside - and changes in temp ultimately make it worse for a long time.

Any suggestions? At this point I'm pretty willing to try practically anything that doesn't also produce fatigue (don't have that, don't want it). Placebo effect is fine if I can get it to work.

I really just want to fly south (eliminating the temperature problem), but that can't happen this year for a couple more months at a minimum (sigh).

Magnesium supplementation and B12 might help. So sorry, that must be so frustrating to live with.
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#50 EmilyGF

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Posted 15 November 2017 - 09:40 PM

Check for any things that could be causing inflammation and treat those?

 

FWIW, my mom's back pain (major scoliosis, burst disc, treated with major pain pills multiple times per day) went down to no pain pills daily after she got her two miniscule breast cancer sites removed. And my repetitive stress injury caused by a compressed nerve flares up MAJORLY after my flu shot because of the inflammation. 

 

So anything that treats inflammation might offer some level of relief. 

 

:grouphug:  :grouphug:


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