Frightened and Scared !!!!!!!!

[Spikey]

:( Hi Everyone,

Firstly I would like to Thank you for all your kind words and making me feel welcome.

Well I have been to the hospital today to see the new neurologist about trying to control my pain better as the pain relief I have been taking has not been very effective.

He has told me today that the first thing that I have got to do is to stop taking all of my pain relief (opiates). I am not to take any at all as he wants my body to be free from the medication. This is really frightening me because I have never not taken anything for the pain and although the pain relief I am taking is not very effective it does help a little and I am in constant pain when I take the medication as I know its only going to be worse.

He said the reason for stopping the medication is so that he can refer me to a proffessor who deals with migraines. He does not know how long it will be before I will be able to see the professor but in the meantime I am allowed to take paracetamol.

He said by being free from medication when I see the professor it will allow the professor the deal with all of the pain as it will be present and not masked by pain relief. He will apprantly prescribe pain relief which spacifically works on migraines.

I am so scared at the moment and I just dont know what to do about it as the pain is bad enough as it is without having to deal with it without pain relief. I can understand what they are saying and why they are doing it but it doesnt make me feel any better about it as my pain is crippling me. I also know that paracetamol doesnt work as I have tried it before.

I would be grateful for any advice if anyone has any I realise noone can physically do anything to help but I am at my wits end.

Happy Chatting

Natalie :( *fantasia

[GardeniaGirl]

Hi Natalie -- I can understand exactly how you are feeling.

If these doctors would spend one day in our body, I suspect they might alter some of the advice they dole out.

I am not sure how to advise you- but I think one thing to remember is that ultimately it is YOUR body and you have the final say about treatment.

Some docs are anti-opiates. They will not say this directly, but they will attempt to convince all of their patients that opioids are a) bad, b) not useful, c) making things worse, etc.....

so if you are dealing with a doc like that, you may be up against his "philosophy" or "opinion" without realizing it.

I would wait until I met with the new doc before I would stop my pain meds, personally.

If the new doc can develop a treatment plan for you that involves decreasing your meds, then you should wait to actually meet with him and then discuss that.

My own neurologist went through something interesting a year ago. He had been practicing for over 20 years, and was a very nice, caring man. But then he had a major health crisis happen and it took him out of work for about 3 months.

When he returned to work, he told me (because I asked), that the experience really changed him and gave him much more sympathy and empathy for the struggles his patients face.

This highlighted for me that we are often dealing with docs who may be well-intentioned, but they truly are unable to grasp what they are advising when they tell someone to go off all their pain meds.

I hope others will come along with more ideas for you--- this has got to be beyond frustrating -- i understand the stress you are feeling.

hang in there!
GG

[Mark N]

Natalie, I think GG stated my advice very well. The #1 thing is it is your body and you need to decide what is the right way to deal with this. If your migraines are your biggest issue then I would try going off the pain meds. If however, your pain is the top problem or as big a problem as your migraines then I wouldn't stop the pain meds before seeing the professor.

If you are focused on the migraines you may have to be clean of the meds to find out if they contribute to your migraines. It isn't an easy path this NS has set out for you and it is something only you can decide.

[JAVISI]

Spike,
I too would be scared. I would talk to your Dr about weaning you off of these meds. Coming off of these meds cold turkey can be harmful*grimace . I am scheduled to go to a pain clinic next week. I am anxious and yet a little scare too! I wish you the best!*heart

Dreaming Big and Reaching for the Stars, *cg07 Javi

[BrokenBladder]

Spikey GG did state the sitution very well. Your body, your paain, your pain!!
I'm sorry that your so stressed out about this but if you take care of your own health then you will feel better!!

[Kathi49]

Natalie,

I don't know how to advise you either; just wanted to say I feel for you.

I have kinda/sorta been through this. But I am the one that asked to come off all meds and just start over. At that point in time nothing was working. But please know I had TWO types of headaches going on and one of them being migraines. Anyway, long story. Just know that at one point the Neurologist I had at that time thought I might be having rebound headaches from the meds. As it turns out, the headaches were coming from my neck and then would trigger migraines.

So, in a way, I understand what your Neurologist is saying. They probably, as you are saying, want you to be free and clear of opiates so that they can determine what the triggers are, etc. But I know...it is horrible to have to deal with. And, yes, it was debilitating. But I sort of view it like having injections too. I was not allowed to take any pain meds the day of an injection; they didn't want any meds masking the pain so that they could ensure they were in the right place. What I mean is eliciting a pain response. If my pain had been masked, then my response would might not have been accurate. I am always told...no pain meds on the day of until AFTER the injection.

And I am just guessing, but I would imagine they might want to try you on Imitrex or Maxalt or something similar for the migraines.

I also agree with Javisi, just go slow and taper down. I am guessing too you may have some time to do this.

I certainly hope you can get through this and get in and get it taken care of as soon as you possibly can. Personally, and in the meantime, I would just do as they recommend. But I also know it can be a rough time. Hang in there I know it isn't easy. And again, I am not really advising...I just understand what the Neurologist is trying to accomplish; right,wrong or indifferent. But too, if gets pretty severe, I would make a call and let them know about it.

[photonut]

Hey Spikey:
I agree with GG, Mark, and Lisa.I hope you can get through this and taken care of as soon as possible. Personally I would just do as they recommend as Kathi stated...Good luck and know We are with you.Hugs...Allie *bunch

[Spikey]

:o Hi Everyone,

Thankyou all for you kind word and advice I really do apprieciate it. Having other people to chat with who know what it is like to constantly be in pain is really helpful and also makes you feel as though you not on you own.

I am going to think hard about what to do over the next few days and not make and rash decisions that I might well regrete.

I am due to go on holiday for 2 weeks on sunday so I dont want to ruin my holiday more than I have too because of pain.

I am trying to keep on smiling, and I will keep you all posted on how im getting on with things as often as I can.

Happy Chatting

Natalie *fantasia

[Lea]

Natalie,

If the pain is caused by a growing adenoma how in the world will being treated for migraines relieve the pain coming from the tumor in your ear? That doesn't make any sense to me at all. Did the neurologist note that you had a huge growth in your ear?

[Kathi49]

Lea and Natalie,

Now you both have my curiosity up. Are you sure it wasn't acoustic neuroma? I only ask because that is one of the first things the PM checked for and due to the dizziness and balance problems I was having. Or did I miss something here?

[suede]

Spikey,

You have been offered great advice and I can't add to it.

I only want to tell you how sorry I am that your having to go through this and I hope that you can get it settled soon.

Linda

[Spikey]

:o Hi There,

Lea you have hit the nail on the head with that one. That has been my arguement all along. I cannot understand why they think migraine medication will work when my pain is caused by the tumour.

They seem to belive that the surgery I had in 2005 has also casue me a lot of damage both musclular and with the nerves. I get intense pain from the muscles in my face on facial movement. I get a lot of defferent nerve pains with pins and needles constantly in the right hand side of my face and head and I get a lot of shooting stabbing pains in my head which are believed to be cause my nerve damage. On the top of all that I get a lot of pain from intense headaches and migraines. The headaches and migranes are believed to be caused from the tumour so I cannot understand how migraine tablets will help as the tumours is always there and will never be reduced untill something is done about it.

I am trully confused about it and as I have done what was asked of me and come off of the medication the pain at present is horrendous.

Kathi49 I am not sure if its acoustic neuroma but I will run it by my consultants the next time I see them to see what they think about it being this. Thanks for your advice and support.

Linda thanks for you kind words, I will keep you all informed on what happens with relation to my complaint.

I have not been on for a few days as I have got a water infection and it has really made me ill. All that I have wanted to do is sleep and I have not known whether I have been coming or going. I just havent been able to think straight. I have anti biotics for it from my gp but the first one she gave me didnt work because the infection I have is only sensitive to amoxicillin but in allergic to penacillin so I am unable to have amoxicillin. She has tried me on another type but she said that if these dont work then I have got to go into hospital and have intravenous anti biotics. I will also keep you all informed about this too.

Hope you are all ok and I will chat with you again soon.

Happy Chatting

Natalie *fantasia

[shotspine]

I have no advice for you but I can send you these.........

((((((((((((((Natalie))))))))))))))))))

Bless you!!!

ss