I have had PHN for five months and am barely coping. What else can I do?

What is Dr. Matharu's first name?

 

hi sorry to hear about your pain there are many different drugs thst can be used such as Oxcarbazepine , carbamazepine,  Lamotragine and many more but although they were very effective for me i became allergic to all medications that did me any good.details of consultant are as follows

Dr Manjit Matharu BSc, MBChB , PhD , FRCP

Senior Lecturer and Honoury Consultant Neurologist at UCLH 

i am in the headache clinic far more specialised than a pain clinic eventhough pain clinic carried out nerve blocks taht gave me some releif that seems to make it worse when it returns as when nerve block takes pain away you realise how bad you are i had one recently when my GP injected qaurazone into nerve fantastic for 2 weeks now as bad as ever but some nerve blocks can last a lot longer hope that helps

Hi Mark:

I had a neurostimulator implant.  It was a fairly complex procedure.  They even administered truth serum if you can believe it to ensure the pain was real (insurance fraud cases).  For me I have two types of pain a deep stabbing pain that lasts a few seconds at level 8 and can have multiple flashes within a minute or so and then repeat.  THe stimulator for me helped with that.  THe surface pain it didnt for me make much of a difference.  They will likely do the neurosurgury and test your pain perception to make sure they have the right nerves, then the device will be external for a day to ensure it works/helps and then surgically implant it.  There is a website that explains it well.  Bascially competes with the neural pathways to deaden the pain, confuse the brain.  The stimulator was also implanted prior to going to maximum narcotic fentanyl doses which I am on now.  Each person is unique in terms of location, type, duration and frequency and intensity of pain.  As such one tries anything.  Like you I am not at the 7 year plus mark.  I had an elderly physician that hugged me and said he has seen improvements in 5 years.  So that gave me hope.  It becomes a coping strategy - I ended up on disaiblity and now am retired.  Fortunately my employer was supportive and I have a decent pension and benefits however the social and living challenges are significant.  Know you are not alone - that helps a bit in not feeling isolated or low given most people dont understand.  if you have any quesitons feel free to ask.  The neurostimulators have likely improved technology wise over the last 5 years as well.

Hi Jim

    Thanks for that i bear that in mind my GP has suggested i finish work and my manager has put the case to HR department i can get pension next year at 50 if i go out on ill health. My pain sounds very similar to yours the constand pain / pressure i feel and then stabbing shooting pains im at my wits end and as you say its a matter of coping. 

     i get back in  touch im sure can you send me the website that explains it if you still have the link please 

         Thanks Mark

I had it installed in 2010 so some time ago.  I will see if I can find the link however I see lots of new info.  I had a medtronix device installed.  You can change the intensity, pulse width, amplitude etc from a remote control.  One plus now is the airport screening technology lets it through - so that is no longer a hassle.  I also know the psychological torment of trying to go on disability.  I had been promoted into a senior position and was in it for about 3 years when this happened.  There was a public crisis in drinking water and I had to be on television and endless media interviews just as I was stepping down to go on disability.  I did it but took everything I had in me.  I wasn't ready to retire.  I taught for a year at a University to bridge me given the hours were reduced and no huge day to day stressors.  However even that was difficult - basically worked and went to bed at 7pm to meditate from the pain and weekends were recovery time as well.  I have a huge respect for people now with "invisible" chronic illnesses.  All of my friends ran for their shingles vaccine.  Like me noone even knew really what shingles was and noone ever heard of PHN.  jim

forgot to add.  It sounds like you actually are getting medical care from people that know what they are talking about.  Unfortunately it is trial and error with progressively more invasive or sideeffect prone procedures/medications.  But as we know one will do anything for pain relief.

hey Jim the funny thing about this is im in the water industry but dont have to do any TV interviews and the job has not helped the condition as i been called out all hours of the day and night. the implant you had sounds the same as what they are talking about for me. The one thing i have found is the weight gain but i also find that hi calories help ? the condition. I have to say the people i am dealing with in London seem to know what they are on about and have a support network i can just phone or email anytime and they get back to me within 24hrs. im probably looking at a disability claim or PIP as they call it now its really great to talk to you as you been there i have a friend who has mild Trigeminal Neuralgia and trys to say she knows what its like but im sorry she knows nothing as this is re-lentless as you know. All my medical care is on NHS and i must say now i found this site i will share the good and the bad in the hope of helping someone if only one thanks for your help 

i may have mentioned but I am thinking for me that weight gain has aggravated the pain.  Simplistic view is skin stretching.  When I lost a lot of weight the surface pain was better but so many factors who knows for sure.  I am trying to lose it again.  Talking about 170lbs vs 200 - that type of range. Also my area is in the shape of an ellipse from the bellybutton to centre of the back.  Makes it really difficult for sleep given two sides are impacted and can only sleep on my left side - not on back, nor front nor right.  another issue wrt sleep.   thanks for sharing and hope you have some good news to report in the future   j

Absolutely right on lenny.  It is 2am here in canada and I am up because the sheets/blankets touched me or I rolled over.   Clothing and fabris is absolutely key.  Everyday I am shirtless at the end of the day. Sometime earlier.  A key factor in why I had to go on disability when working.  I found  snug but not tight soft cotton is the only fabric that works.  I read one case where a woman created a metal cage so that her clothing wouldn't touch the sensitive area.  Not possible given I have on the torso front and back on the right side - a large area that is eliptical from bellybutton to centre of back.  Unfortunately I have to constantly buy new t-shirts givent they stretch or lose their softness.  I have never ever been able to wear a shirt or sweater directly for the last 7 years.  I has to be separated from skin contact.  The problem of course is there is still friction and the pain creeeps up from a 4 to an 8 at which point I have to rip off the clothing.  If not it is absolutely agonizing and goes to a 9.  A friend of mine has a grandmother in a nursing home who has dementia and she is always in tears and tearing at her clothing.  Not a fate I want.   Thanks for sharing.  This site is so helpful.  I have forwarded on the recent article on cryogenics and PHN to my doctors.  I dont understand the underlying biological mechanism mind you given there is no freezing of the nerves.  But I will try anything.

take care and clothing optional is the way to go

jim

Hi Jim

I have exactly your condition only on the left side

Yes the relief from no clothes is amazing

What I find frustrating where I live, Australia, is that

as an older citizen I new nothing about this disgusting disease until I finally presented to a hospital with the pain and the rash.

I think it would be most beneficial if the government

Medicos were to send all people over fifty, a leaflet through the mail that warns of the possibility of contracting Shingles and what to look out for.

Then at least you would know immediately what to do and receive the early treatment the can stop PHN

from developing.

I know this thing normally affects older people but if it attacked the majority of people, say in their 20's there would be a lot more publicity and reaction from all quarters

You are right.  Here in Canada now that there is a vaccine there are many TV ads but they dont go far enough.  GIves the impression the pain is temporary vs for some it can be life-long.  I did an article that was published I was told on my specific situation.  In that case it was more about getting the govt to pay for and approve mass vaccination - motivated by profits in part.  Yes I didn't even know what shingles was.  I think in a broader context the govt should ensure we all know about all vaccinations that are possible today even if one has to pay for them.  And yes the rash isn't diagnosed early enough.  I was also just outside of the critical period given the diagnosis wasn't made and I waited in emergency with kidney stone like pain.  It was a weekend.  By the time I saw my doctor I was just at the 72 hour mark - borderline in terms of receiving the antiviral.  On the clothing side maybe we can exchange info on what works best - as I said snug but not tight soft cotton.  I even thought about are there any "wonder fabrics" that could be developed.  People think silks might help - actually silks are horrendous - at least for me.  Thanks again for the note.  As a side note - have been to NZ and loved it, still want to see your country.  jim

They are now running ads promoting the vaccine in the States that do a good job of describing how bad shingles is. I hope people pay attention. After seeing me, or going to my FB page, many of my friends have opted for it.