trigeminal nerve issues, anyone ever heard of this

[disneysteve]

Since it is on both sides, it's unlikely to be "trigeminal neuralgia" as that is usually only on one side, and usually due to local irritation of the nerve.

Just keep in mind that being bilateral doesn't rule out TN. One of my closest friends has bilateral TN. She had brain surgery a few months ago to correct it on one side and she's having surgery again next month to fix the other side.

 

[Montecfo]

I think we can tap the brakes on the double surgery!

Batatmath I think you are onto the right path thinking med side effect given all.

All the best!

 

[badatmath]

I think we can tap the brakes on the double surgery!

Batatmath I think you are onto the right path thinking med side effect given all.

All the best!

Thanks! I called the kidney doc to see if by chance they could move up my appointment so we could discuss but I'm not that lucky. And the neuro I left the vm for this morning didn't call back of course. But I'd really rather avoid the cost and radiation of a scan if I can get a med switched to try that first.

 

[ivinsfan]

Did the doc actually use the term nonsense? Because a response like that is absolutely inappropriate....find a new one if you can

 

[Montecfo]

Thanks! I called the kidney doc to see if by chance they could move up my appointment so we could discuss but I'm not that lucky. And the neuro I left the vm for this morning didn't call back of course. But I'd really rather avoid the cost and radiation of a scan if I can get a med switched to try that first.

Can't you call and discuss getting an alternative with the nurse?

In my experience a new appointment might not be needed.

 

[badatmath]

Can't you call and discuss getting an alternative with the nurse?

In my experience a new appointment might not be needed.

So you mean call the cardiology nurse (they are the prescriber) and ask for new meds?

I am not clear on the role of the kidney guy aka "hypertension specialist" other than he seems to have ruled out a kidney function issues (though the cortisol could point to a need for more tests).

I thought it was rather abundantly clear after my 6/1 ER visit I was not doing well (low potassium) and they should change the meds but they didn't just sent me off to find the "problem". (Potassium has normalized as well since). I meandered along thru June with heart rate and bp spikes but okay and the numbness came on in July while I waited for kidney doc. He . . . seems very interested in the blood pressure but not the numbness. I see him for next steps next week.

IDK who is in charge of meds or if I will ever see him again after next week - I assume if cortisol is determined to be a problem I see an endo? To be fair to the kidney doc - it is not every day patient comes in talking about something out of left field either.

Cardio nurse seems a bit nervous/afraid of me. I think they have failed at so many meds (just didn't work up until the allergic reaction to ACE) she feels a bit uncertain. IDK. I have really had much of a health issue much less multiple doctors/nurses.

 

[badatmath]

I guess I can step down on the valsartan for a couple of days - they told me it was a drug that required tapering - and try to get ahold of the nurse. The blood test should be available to them too.

I didn't know I was so bad at this "doctoring" thing

 

[Badger]

The Trigeminal nerve is cranial nerve 5 and has three branches that are all sensory except for the third branch (Mandibular) which is both sensory and motor. It relays sensory information mainly from the lower jaw for touch, pain, and temperature.
If it were me I would consult a neurologist and have some tests conducted before making a decision.

Cheers!

 

[badatmath]

Did the doc actually use the term nonsense? Because a response like that is absolutely inappropriate....find a new one if you can

Yes he did. All the kidney docs in town seem to work for the same company which is kind of not great. I realize it doesn't mean some aren't better than another but will be harder to change I think.

The Trigeminal nerve is cranial nerve 5 and has three branches that are all sensory except for the third branch (Mandibular) which is both sensory and motor. It relays sensory information mainly from the lower jaw for touch, pain, and temperature.
If it were me I would consult a neurologist and have some tests conducted before making a decision.

Cheers!

Yeah it seems obvious getting into a neuro is going to be vastly more difficult than I expected though. I mean I expected to wait for an appointment of course, but not so much that they had specialties.

 

[Teacher Terry]

19 years ago when I was first put on a beta blocker I was winded just walking around at work while before the medication I was walking 4-6 miles fast every day. The cardiologist wouldn’t change it so I went to my GP who did and the problem was solved. I never went back to the cardiologist. It’s maddening when doctors don’t listen.

 

[badatmath]

19 years ago when I was first put on a beta blocker I was winded just walking around at work while before the medication I was walking 4-6 miles fast every day. The cardiologist wouldn’t change it so I went to my GP who did and the problem was solved. I never went back to the cardiologist. It’s maddening when doctors don’t listen.

Yes and I don't understand why they don't. It isn't as if it costs them money to change something. I am going to ask my GP to take it over when I go for physical in October (unless the kidney guy impresses me) but it has been 10 months 1 hospital stay and 2 ER visits so honestly I won't be surprised if GP doesn't want it. Still she might have a better doc to recommend (I inherited the one from hospital).

 

[catii]

The first person you should talk with is your PCP! He/she should review all of your medicines to determine whether they couod be causing your symptoms. Stopping one, just to see if it helps a symptom, is a very-bad idea! Only a physician should do that.

There has to be more than one Neurologist in your town, right? When I needed one for a serious problem, I stayed on the phone until they gave me an appointment, for the next day! Don't use VM, stay on the line & tell the nurse that you're scared, because you're also on cardiac & kidney medications, & things are going numb. Also, don't be so sure that you don't have diabetes! My A1C jumped from 5.5 to 8.7 in three months, which was quite a shock, as I had no symptoms, but it definitely wasn't a false alarm.

Remember that no one cares more about your health than you do!

 

[Koolau]

19 years ago when I was first put on a beta blocker I was winded just walking around at work while before the medication I was walking 4-6 miles fast every day. The cardiologist wouldn’t change it so I went to my GP who did and the problem was solved. I never went back to the cardiologist. It’s maddening when doctors don’t listen.

If I may ask, what class of drug did your GP substitute? I'm having issues with walking AND leg swelling. I think my BB is limiting my heart too much. BUT I need at least some BB to prevent A-fib. Cardiologist recently INCREASED BB because I had an A-fib "incident." Not sure which way to go.



I usually accept what the "expert" tells me - but, quite honestly, when I had to change cardiologists because the old one retired, the new one changed everything around. Now, I don't know what to think. GP has been very good about helping with other issues, but I think he's reticent to "over rule" a cardiologist.

 

[badatmath]

Koolau, I don't have afib (that I know of) but I did just recently read a book on hypertension meds which includes a little info on beta blockers. https://www.amazon.com/Hypertension-You-Drugs-Right-Pressure/dp/1442215178

Might be a bit out of date but I was able to get it on hoopla for free. It helps to sort of understand why there are so many at least. Keep in mind the focus is on hypertension and not afib. I assume you are on blood thinners? I think that is all a friend is taking for the afib and nothing else but IDK for certain.

I don't recall if the book mentioned afib at all since I wasn't looking at that but I think calcium channel blockers can sometimes be used for that.

 

[badatmath]

The first person you should talk with is your PCP! He/she should review all of your medicines to determine whether they couod be causing your symptoms. Stopping one, just to see if it helps a symptom, is a very-bad idea! Only a physician should do that.

There has to be more than one Neurologist in your town, right? When I needed one for a serious problem, I stayed on the phone until they gave me an appointment, for the next day! Don't use VM, stay on the line & tell the nurse that you're scared, because you're also on cardiac & kidney medications, & things are going numb. Also, don't be so sure that you don't have diabetes! My A1C jumped from 5.5 to 8.7 in three months, which was quite a shock, as I had no symptoms, but it definitely wasn't a false alarm.

Remember that no one cares more about your health than you do!

Not diabetic unless I have developed it since Wed. Can't get to PCP until Oct - no appts and tney are unlikely to overrule cardio or kidney doc without info.

Thanks for your support however.

 

[Koolau]

Koolau, I don't have afib (that I know of) but I did just recently read a book on hypertension meds which includes a little info on beta blockers. https://www.amazon.com/Hypertension-You-Drugs-Right-Pressure/dp/1442215178

Might be a bit out of date but I was able to get it on hoopla for free. It helps to sort of understand why there are so many at least. Keep in mind the focus is on hypertension and not afib

I don't recall if the book mentioned afib at all since I wasn't looking at that but I think calcium channel blockers can sometimes be used for that.

Thanks for the reference.

My cardiologist did say the BB's are not that effective for BP but excellent for preventing A-fib. But I have both (on and off) A-fib and permanent elevated BP.

Also, BB's do affect heart output and overall heart efficiency. SO I'm sure there are pluses and minuses to their use. I do also take an angiotensin II receptor antagonist which w*rks on a different principle. Together, I get reasonable results, but I still am concerned about the side effects of my BB.

Thanks again.

 

[Teacher Terry]

If I may ask, what class of drug did your GP substitute? I'm having issues with walking AND leg swelling. I think my BB is limiting my heart too much. BUT I need at least some BB to prevent A-fib. Cardiologist recently INCREASED BB because I had an A-fib "incident." Not sure which way to go.



I usually accept what the "expert" tells me - but, quite honestly, when I had to change cardiologists because the old one retired, the new one changed everything around. Now, I don't know what to think. GP has been very good about helping with other issues, but I think he's reticent to "over rule" a cardiologist.

I had to stay on a beta blocker because I have a tachycardia and HBP. I was on Topral which being winded is a side effect for some people.

 

[Teacher Terry]

6 years ago I was having serious neurological issues and had to wait 6 months to see a neurologist. Even my GP couldn’t get me in faster. Obviously locally we have a shortage of doctors.

 

[Koolau]

6 years ago I was having serious neurological issues and had to wait 6 months to see a neurologist. Even my GP couldn’t get me in faster. Obviously locally we have a shortage of doctors.

Yeah, particularly specialists. My PCP is SO knowledgeable about so many things that he has been a valuable resource when I couldn't get in to see a specialist right away. Not everyone has that depth of experience/knowledge and I really appreciate it. The more "specialized" the specialist, the longer the wait. Neurology is one of the longest wait times. I know a lady that had to wait 6 months. Basically, they did all these tests and finally said, "Well, we don't really know, but it might be such and such but we can't tell definitively."

 

[Montecfo]

If I may ask, what class of drug did your GP substitute? I'm having issues with walking AND leg swelling. I think my BB is limiting my heart too much. BUT I need at least some BB to prevent A-fib. Cardiologist recently INCREASED BB because I had an A-fib "incident." Not sure which way to go.



I usually accept what the "expert" tells me - but, quite honestly, when I had to change cardiologists because the old one retired, the new one changed everything around. Now, I don't know what to think. GP has been very good about helping with other issues, but I think he's reticent to "over rule" a cardiologist.

With BP especially there is a lot of art involved. And well trying things to see what works.

 

[Koolau]

With BP especially there is a lot of art involved. And well trying things to see what works.

I hear you on that. It seems my cardiologist is pretty blaze about my situation - as long as the numbers look okay. But, I'm concerned about possible side effect which she sort of ignores it seems to me.

 

[Badger]

The first person you should talk with is your PCP! He/she should review all of your medicines to determine whether they couod be causing your symptoms. Stopping one, just to see if it helps a symptom, is a very-bad idea! Only a physician should do that.

For a much quicker access to the information from a highly trained professional with more years of extensive education in drug interactions would be a pharmacist. A PCP has had a couple of courses. A specialist will have a bit more but usually the drugs that are appropriate for their specialty. As with any health professional you need to do some screening.

Cheers!

 

[badatmath]

For a much quicker access to the information from a highly trained professional with more years of extensive education in drug interactions would be a pharmacist. A PCP has had a couple of courses. A specialist will have a bit more but usually the drugs that are appropriate for their specialty. As with any health professional you need to do some screening.

Cheers!

I was thinking about this actually. I remember in the old days how nice the pharmacist was. . . Now I don't even see one. NO new med counseling (not that I need it generally). . . just sign here you don't want it . . . (I have to use a particular chain for my maint meds per my insurance). And I used to be on one ordinary little med so it wasn't a problem.

 

[badatmath]

Well the neurologist I left a message for last week called back today so I guess I have an appointment. The cardiologist didn't but I took half a pill of suspect med.

 

[Echard]

I just saw this. I had this problem in the last year. For me, the pain was unbearable and bizarre. I went to my PCP and he put me on a med specifically for this problem. I also immediately started wearing a mouth guard to bed. Within a month, the symptoms just about went away. I was so happy, because it could become a permanent affliction. You might try what I did.