How many bumps can there be in this road?

After three visits to the ER - my third Doc took one look at the rash I've developed and thinks I have shingles (PHN). He did quite a lengthy Q&A with me and thinks I MAY (he is hesitant - based on the rash and Q&A only) have been misdiagnosed with TN and have shingles instaed.

Being on the same meds that would be used to treat PHN, its possible I haven't had a rash flare up for this length of time or this bad before.

I am now taking a 7 day anti-viral trial. I hate to say it but within hours I could feel the intensity of the rash subside so I think he may be onto something. When I read that Herpes Zoster could be a culprit in TN I had no idea it could be in lieu of TN!

I cannot stop crying. I am scheduled to see Dr. Kaufmann in Winnipeg next month to see about the possibility of and MVD. I waitied three years to see him and have had TN for over 10 years. I thought the MVD or some alternative treatment he suggests was going to be my saving grace. Now tonight I can only think that this pain and drug regime is here forever. On top of that I am going to be faced with this impeding rash to show up at any given time accompanying with an antiviral series of drugs. I was just starting to feel like I had a future, now I feel like its been yanked away. I feel lost.

I've asked Red for a good resource on PHN to arm myself with.

They say He doesn't give us more than we can handle but how many bumps in this road is HE going to test me with?

Are you saying Jackie that you have TN but still got shingles? I am so confused and have been on a major rollercoaster the last 24 hours. If its TN - I was looking forward to surgery and potential remission. If its PHN then I may already have been following a norman course of treatment, already taking Gabapentin, Nortripteline and Topomax (three of the top listed drugs for PHN treatment). I am feeling like if its PHN then this is it - I 'm at the end of the line.

Also - I don't see a "Ben site" for PHN. If its PHN and not TN now I'm really on my own. I feel like a stranger on this site, like I don't belong here anymore. I don't have a place to call my home anymore. LwTN is my home. I know medically you indicate shingles may be better, but emotionally I don't know what to do wihout my TN family.

No concrete results until I talk with my neuro in Sept so I am trying to get out from behind this dark curtain, but this is emotional hell for me. Thanks for the reply Jackie. It has helped me get a new perspective.

Forgot to add Jackie - the site of the shingles outbreak: it is a visual blue print outlining the exact location of my TN attacks on my face.

Elaine

Thanks Jackie. I do feel better today after having some time to actual think, rather than react. I needed you words and support. Elaine

Elaine, I am so sorry that you have to go through this. It sounds so disheartening and miserable and you must feel as though you have had the rug pulled out from under you. The timing of this is especially crummy given how long you have waited to see Dr. Kaufmann. My heart goes out to you.

No matter what the outcome from your appointment, LwTN is still your home and you belong here as much as ever. I feel the same about this site that you do; it has done more to help me deal with this condition than any doctor or medication (though I am grateful for those things as well, believe me) and I would be lost without it. From what I have read here, it seems as though there are quite a few people in this group whose symptoms don't exactly match the definition of TN (I am one of them) but I believe that everyone who is dealing with the misery of facial pain has a place here. I think it is worth pointing out that we wouldn't know what to do without you either! You been such a valuable contributor to this group; you have offered such calm, sage and inspiring advice to us all and it would be a huge loss to the LwTN if you were to go. We're all in this together, after all.

I will be sending you good thoughts in hopes of a quick recovery from the shingles and the bright future you so deserve.

Take care,

Chris

Thanks so much Chris! I'm trying to figure things out and you are right. There are so many people here that don't fit the mold.....its a good thing for our site or all these people would feel lost out there all on their own.