Aa
What would alice do!
It feels like I fell down that hole!
Everything is not what it seems to be and I feel lost.
Even what I once was sure off, like which way is up,
seems to be turned upside down.
One Pill make you "happy"
the other well who knows what the one is supposed to do.
and then there are the ones they give you
for help, with the ones that gave you!
Pain is the cheshire cat. knowing the answers but won't tell.
The Mad Hatters.. right the MD's!
and the Queen now runs the HMO's!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Please tell me what do you do:
____ When you are all alone and you have a major flare up?
____ We all know the ER is the last place to be, but who do you call?
____ What do you expect that person to do?
It has been a bad few nights. Called the on cal MD and he told me to take 3x as much as the RX dose of Demerol. His office called the next Am to check on me, but I was so sleepy I could not talk. So I just siad I was Ok and hung up. He also told me that if the pain did not go away, then call 911 an go to the ER for IV meds.
I guess there really is NOTHING THEY CAN DO!
Today a new symptom came up.
**** EXTREAM and VERY INTENCE PAIN in my left TMJ area!
It hurt so bad, I was on the floor, shaking, sweating and in tears I could not stop.
A few times I had to hold a towel over my mouth to cover the screams.
After about 5 mins the pain began to wane, but if I yawned or opened my mouth BAM it was back again.
I felt a mess so I took a hot shower and thought if I could not get this pain back down to "normal: then I would have to go to the ER, and not having gotten dresed for a few days I really smelled so bad. A shower was a must. Or mybe I should have just gone as I was and explain /let them see that the pain this weekend has been so debilitating!
The shower did help my on a psychological level as I once again smelt like a human being, But the pain was gone except if I open my mouth. SO thinking this was just TMJ, I called my local Dentist. He will see me in the AM.
I have never had TMJ issues before. This pain was so much like TN pain but higherand in freont of the ear, on the left side.
I really feel LOST.
......If I go through the Neurology Door, I will get goofy meds.
......choose the Pain MD door, and those pills just cover the cause
...... dentist can only do so much and CAUSES so MUCH MORE!
...... PCP well she listens, except after hours when I need her the most. and I have to call the 24 Rn Help line who has someone take a message and then wait an hour for the RN to Call you back,,,, and then have the RN tell you to go to the ER! and we all know that is a waste of time....
Please tell me what do you do:
____ When you are all alone and you have a major flare up?
____ We all know the ER is the last place to be, but who do you call?
____ What do you expect that person to do?
Everything is not what it seems to be and I feel lost.
Even what I once was sure off, like which way is up,
seems to be turned upside down.
One Pill make you "happy"
the other well who knows what the one is supposed to do.
and then there are the ones they give you
for help, with the ones that gave you!
Pain is the cheshire cat. knowing the answers but won't tell.
The Mad Hatters.. right the MD's!
and the Queen now runs the HMO's!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Please tell me what do you do:
____ When you are all alone and you have a major flare up?
____ We all know the ER is the last place to be, but who do you call?
____ What do you expect that person to do?
It has been a bad few nights. Called the on cal MD and he told me to take 3x as much as the RX dose of Demerol. His office called the next Am to check on me, but I was so sleepy I could not talk. So I just siad I was Ok and hung up. He also told me that if the pain did not go away, then call 911 an go to the ER for IV meds.
I guess there really is NOTHING THEY CAN DO!
Today a new symptom came up.
**** EXTREAM and VERY INTENCE PAIN in my left TMJ area!
It hurt so bad, I was on the floor, shaking, sweating and in tears I could not stop.
A few times I had to hold a towel over my mouth to cover the screams.
After about 5 mins the pain began to wane, but if I yawned or opened my mouth BAM it was back again.
I felt a mess so I took a hot shower and thought if I could not get this pain back down to "normal: then I would have to go to the ER, and not having gotten dresed for a few days I really smelled so bad. A shower was a must. Or mybe I should have just gone as I was and explain /let them see that the pain this weekend has been so debilitating!
The shower did help my on a psychological level as I once again smelt like a human being, But the pain was gone except if I open my mouth. SO thinking this was just TMJ, I called my local Dentist. He will see me in the AM.
I have never had TMJ issues before. This pain was so much like TN pain but higherand in freont of the ear, on the left side.
I really feel LOST.
......If I go through the Neurology Door, I will get goofy meds.
......choose the Pain MD door, and those pills just cover the cause
...... dentist can only do so much and CAUSES so MUCH MORE!
...... PCP well she listens, except after hours when I need her the most. and I have to call the 24 Rn Help line who has someone take a message and then wait an hour for the RN to Call you back,,,, and then have the RN tell you to go to the ER! and we all know that is a waste of time....
Please tell me what do you do:
____ When you are all alone and you have a major flare up?
____ We all know the ER is the last place to be, but who do you call?
____ What do you expect that person to do?
This is what a person can do to help the body fight the symptoms.
To to get relief from pain or Tn trigeminal neuralgia naturally, the full pranayam exercises are described below.You can do this alongside any medication.
This works gradually, so allow time (3 months to 9 months) and concentrate fully on the breathing. Keep a record of episodes and how you are feeling. This will show you a trend.Avoid cold drinks and drink warm water.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after 1 minute.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 10 to 20 minutes twice a day. Not for pregnant women. Seriously ill people do it gently.
Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril
then – close left nostril with two fingers and breath-out through right nostril
then -keeping the left nostril closed deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep breaths into the lungs.
Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 21 times
After you are better, continue the pranayam once a day.
To to get relief from pain or Tn trigeminal neuralgia naturally, the full pranayam exercises are described below.You can do this alongside any medication.
This works gradually, so allow time (3 months to 9 months) and concentrate fully on the breathing. Keep a record of episodes and how you are feeling. This will show you a trend.Avoid cold drinks and drink warm water.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after 1 minute.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 10 to 20 minutes twice a day. Not for pregnant women. Seriously ill people do it gently.
Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril
then – close left nostril with two fingers and breath-out through right nostril
then -keeping the left nostril closed deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep breaths into the lungs.
Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 21 times
After you are better, continue the pranayam once a day.
Sorry you are going through so much! Alice is a perfect analogy. It's good you had an 'episode' or whatever you call it while you were with your PCP, she sounds like she is a good doctor who takes things seriously and is trying to solve your problem(s) and is there for you. At least you have some possible explanations, and I hope they figure things out for you. I am keeping my fingers crossed that it is the easiest and least invasive for your sake. Best of luck to you.
PSSSSS: OH my PCP said if the pain comes back, I should go to the ER and have them call her! and she will let her associates know what her concerns are so if they are the ones on call that night, they will have a better understanding of what is going on and I don't /won't need to explain and educate them. : )
FU: One more thing to worry about.
I had a routine office visit for today, just to get an EKG cause one of the new meds my Neuro wants me to try can cause heart issues as well as liver issues, ( I had a heart attact at 14 so this is always an isue for me, and my liver hates drugs as much as I do!) The EKG was GREAT,,, I knew it would be so as soon as the blood work comes back the the liver functions are all Ok I will start ZANAFLEX, it's a muscle relaxer, but very powerfull, even by taking 5 instead of three doses in 24 hours can kill you.
When the Tech was done with the EKG she told me my PCP would be right in! I had not expected to see her so this was a surprise. She wanted to see how I was doing after my PC to her on call associate the other night. Well as we were talking my left jaw exploded in pain. I sort of felt embarassed. She was great. I am sort of glad it happened there and not say at the Post office or the grocery store.
She had noticed that this side of my face was swollen ( the TN is on my right side!) But the pain was/ is so intence it feels like the same. She did a brief exam and said she is concerned about three possible issues! THREE NEW ONES !!!!!!!! DOES THIS EVER END!
She feels the pain and swelling on the left side are caused by issues with the major salivary glands the parotid, submandibular, and or sublingual glands., That there is either a "stone" causing an obstruction ( I just had an 8 cc Kidney stone and had multiable gallbladder stones and one in the tear duct of my right eye! so why does this surprise me!) . an infection, most comonly known as MUMPS, ( but often on Both sides not just one), or from dental issues, or a tumor. which are Often not cancer but need to come out. The triegminal nerves runs through these glands! thus the TN like Pains!
The other issuse that i was to overwhelemd with pain to really listen to has something to do with the blood vessels to my eye lids....
She had me get some blood work to rule out infection, and some other "junk" will have me see and Ear, nose and Throat MD, as well as get an MRI and see my eye MD as well.
My understanding is that if it is an infection, it could be related to the dental issues as well as my Diabetis, I also was told that this could trigger TN in the side, When I told her I have been having some symptoms there for close to 18 months now she asked if I told anyone..... YEAH YES,, the NeuroMD the Pain MD, and well as the infection diease MD she had me go see and ALL fo them said I could not be having Shingles related TN on the left side, and dismissed it as being irrevelant.
If it is an infection,, antibiotics should do the trick.
If it is a stones and it does not pass then , "minor office surgery to remove it" will be done.
A Tunor regardless of cancer or not needs to come out. BUT the SURGEY could cause TN issues as well.
Oh yeah she wants to rule out some bizzare and rear auto-immune dieases as well. I have already been tested for aids and a few others. so at least we can cut that list in 1/2 . Som eo fthe testing might require a biopsy of the gland as well as the palatte and or inside of my lip!
Diabeties,ulcers, arthritis, my anemia, Getting shingles, an eye issue and skin problem I have are all auto-immune system issues, so I will not be surprised if this is the reason for these new problems. HAY maybe with the correct Dx rather than just treating the problems creted, we can begin to treat or at least understand WHY!
I know going to the MD's can be very frustrating.
They feel limited and frustrated with us as well.
BUT Please if you can not advocate for yourself bring someone with you that can.
I am very well educated ( even though I can't type :) ) For years it my my job to be an advocte for others. YET since having Shingles and Lyme (twice) I hae become "the Patient" and gave up alot of to the MD's knowing what was best. WE KNOW OUR BODIES, and we must find MD's that will se us as partners and not as the Patient.
I wonder if I had been more vocal about the left sided TN like pain, would i have answers, rathr than more questions and worries.
I had a routine office visit for today, just to get an EKG cause one of the new meds my Neuro wants me to try can cause heart issues as well as liver issues, ( I had a heart attact at 14 so this is always an isue for me, and my liver hates drugs as much as I do!) The EKG was GREAT,,, I knew it would be so as soon as the blood work comes back the the liver functions are all Ok I will start ZANAFLEX, it's a muscle relaxer, but very powerfull, even by taking 5 instead of three doses in 24 hours can kill you.
When the Tech was done with the EKG she told me my PCP would be right in! I had not expected to see her so this was a surprise. She wanted to see how I was doing after my PC to her on call associate the other night. Well as we were talking my left jaw exploded in pain. I sort of felt embarassed. She was great. I am sort of glad it happened there and not say at the Post office or the grocery store.
She had noticed that this side of my face was swollen ( the TN is on my right side!) But the pain was/ is so intence it feels like the same. She did a brief exam and said she is concerned about three possible issues! THREE NEW ONES !!!!!!!! DOES THIS EVER END!
She feels the pain and swelling on the left side are caused by issues with the major salivary glands the parotid, submandibular, and or sublingual glands., That there is either a "stone" causing an obstruction ( I just had an 8 cc Kidney stone and had multiable gallbladder stones and one in the tear duct of my right eye! so why does this surprise me!) . an infection, most comonly known as MUMPS, ( but often on Both sides not just one), or from dental issues, or a tumor. which are Often not cancer but need to come out. The triegminal nerves runs through these glands! thus the TN like Pains!
The other issuse that i was to overwhelemd with pain to really listen to has something to do with the blood vessels to my eye lids....
She had me get some blood work to rule out infection, and some other "junk" will have me see and Ear, nose and Throat MD, as well as get an MRI and see my eye MD as well.
My understanding is that if it is an infection, it could be related to the dental issues as well as my Diabetis, I also was told that this could trigger TN in the side, When I told her I have been having some symptoms there for close to 18 months now she asked if I told anyone..... YEAH YES,, the NeuroMD the Pain MD, and well as the infection diease MD she had me go see and ALL fo them said I could not be having Shingles related TN on the left side, and dismissed it as being irrevelant.
If it is an infection,, antibiotics should do the trick.
If it is a stones and it does not pass then , "minor office surgery to remove it" will be done.
A Tunor regardless of cancer or not needs to come out. BUT the SURGEY could cause TN issues as well.
Oh yeah she wants to rule out some bizzare and rear auto-immune dieases as well. I have already been tested for aids and a few others. so at least we can cut that list in 1/2 . Som eo fthe testing might require a biopsy of the gland as well as the palatte and or inside of my lip!
Diabeties,ulcers, arthritis, my anemia, Getting shingles, an eye issue and skin problem I have are all auto-immune system issues, so I will not be surprised if this is the reason for these new problems. HAY maybe with the correct Dx rather than just treating the problems creted, we can begin to treat or at least understand WHY!
I know going to the MD's can be very frustrating.
They feel limited and frustrated with us as well.
BUT Please if you can not advocate for yourself bring someone with you that can.
I am very well educated ( even though I can't type :) ) For years it my my job to be an advocte for others. YET since having Shingles and Lyme (twice) I hae become "the Patient" and gave up alot of to the MD's knowing what was best. WE KNOW OUR BODIES, and we must find MD's that will se us as partners and not as the Patient.
I wonder if I had been more vocal about the left sided TN like pain, would i have answers, rathr than more questions and worries.
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