Hey guys! Its been a while since I've been on, hope everyone is well. My husband Dean, has a vp shunt, is still having the bad headaches and still no help. See a new neurologist tomorrow. Hope she can help. He is on Topamax 100mg and not helping at all. Trying for botox but insurance has denied once. Any suggestions?

Hey Lisa,
I too have a vp shunt, it was reviewed/replaced surgically twice last year, and things have not been good since. I've been trialled on all sorts of meds from painkillers, which work but knock me so badly I can not function, anti seizure medication, migraine treatments, which just put my mind in a fog.
I've tried accupunture, chiropractic therapies and massage. I've seen ENT specialists, eye doctors and attended a pain clinic. With very little success.

I have also tried Botox. I found the actual treatment quite painful. The injections were in my forehead, jawline and the back of my neck and shoulders.
My previous headaches were extremely intense, covering the whole of my head. Some people are able to define their headaches to certain regions eg frontal, posterior and types eg. squeezing, throbbing, I was not able to do this as the pain was 'my whole head'.
Since having Botox things have improved in that the headache at the back of my head has reduced, not gone, but reduced. The pain in the frontal area has not improved at all. The pressure I feel within my face is massive, like my eyes are going to explode.
I have been told my insurance will only cover if the treatment gives me a higher than 70% improvement. Unfortunately, at this point, it has not. I have been told that I can have one further treatment, then if that treatment does not give me the 70% improvement, the treatment will be ceased. I am not hopeful. I understand that Botox will treat the tension within the neck and face but I do not believe my pain is related to tension and I am running out of options.
I hope you and Dean have much better luck and although for some people Botox has been the miracle cure, unfortunately not for me. I do hope Dean's headaches are tension related as often the pain is beyond belief along with the stresses on my wife, which you would have an understanding of.

The very best of luck
Merl1n

Wow merlin I sure hope things get better with you! Dean experiences the same pressure in his head as well, eyes feel like they are going to pop. his headaches are all frontal and pressure, insurance just approved botox so we go nov 5th. stress always makes things worse. We are in the same position if this doesn't help then he will have to go to pain management, which he won't be able to work on all that pain meds. hopefully the botox works.
good luck to you
Lisa and Dean

Hey Lisa and Dean,
I truly hope the botox brings some relief and an avoidance of the pain clinic. Pain is a unique thing, nobody can feel your pain, your discomfort and some of the comments of "..well toughen up, princess.." to "...ohh you poor thing..." or "... we understand you pain..." are not very helpful. The last statement was said to me by a nurse in a hospital, whilst I'm curled up in bed, clutching my skull after a craniotomy. My first thought was "MURDER". Understanding and coping are two totally different things.
As for the meds, they can be NASTY. I've been on some real strong opiates which I quickly become addicted too and have awful withdrawals from when trying to stop use. I have some strong sleeping meds but again if I use them for a week each night, the following week I can't sleep without them. I was always in a cloud of drug, I wouldn't drive, it just wasn't safe. It was just yuck. I work with people with disabilities, normally. But I can't be responsible for another person, I'd be putting both my client and myself at risk.
Now, I've cut back on the strong opiates, I still need codeine to manage but at least it isn't oxy. I haven't returned to work and have been told by doctors I may simply not be able too. This I am less than happy about. I am SO, SO very lucky to have a loving and supportive wife, sometimes I wonder why she puts up with me, as when I'm in pain I'm not very nice.
I use alternatives to medical thinking. I walk daily. We bought a hydrotherapy pool, I tried different forms of massage and other alternative medicines. I have found a combination that works for me. I can now manage my pain at a level where I can at least function and not be curled up in a dark room. This is a plus because at one stage I couldn't leave that darkroom during the day. As I say I'm not back at work and somedays that room is till needed but it isn't my residence. I have been pushing myself to do more but end up paying for it the following day and 'slowly' is not a word I know very well, but I am learning to pace myself better. I've been off work for over a year now and although the first month was manageable, now I'm just going stir crazy. I try to give myself tasks to do each day, a goal to reach. Early on these goals were high, too high and I get annoyed when I didn't/couldn't reach them. So I've reduced the goals to sizes I can now manage. Not tasks I could manage prior to all this.
Its all a case of management and the team you have behind you. That's the medical team for the medical side but also your 'family' team, those close to you for the support you need. AND YOU DO NEED IT. I didn't think I did but I truly would be so screwed without my support team. As for the pain management, I need meds. I have cut them right back to 'manageable levels' now and they end up being useless if I take them for too long, so I alternate between alternate and pharmaceutical and sure when it gets unbearable I use an opiate, but I have other ammunition in my arsenal before I need to go opiate.
I hope all goes well with your treatment and please let us know how you get on. I'm very interested in all other treatment options. Heck, if standing in the corner on one leg singing Kumbaya works as a treatment I'd try it.

Merl1n

Hey Merlin, I can understand the need for support team. We too have good support with family, but neurologist we don't care for, he is not there for us. Thinking of changing. Its almost like he thinks Dean is lying about headaches. He wont give him any pain meds cause they cause "rebound headaches". So Dean usually suffers, until the pain gets to a 9 out of 10 I have tordol shots I can give him from our family Dr, which he hates to use. God Bless your wife cause I know how Dean is crabby when he gets a bad headache, but trust me We love you guys or we wouldn't be here helping and supporting, and sticking by you, but that's what marriage is about right? the good and the bad. Dean has a new pain tonight right under his shunt behind his ear, he is at work but says there is no swelling. I hope its not the shunt catheter. Dean too can't do much or he's in the dark room for a day or 2. We put up Halloween decorations and he was down the next day. Just cant do what he used to. Luckily he is a boss at work and has been there for 23 years and they work with him or he wouldn't be able to work. but if he has to go on any pain meds he won't be able to, works around machinery. I worry about him every day he is there. Anyway we are praying that the botox works and like you said can avoid the pain clinic. I will keep you in our prayers. Thanks merlin, it helps me to just talk about it but no one around here really understands what he is going thru.
lisa

Hey Lisa,
Neuros can be such fun. Some are just university qualified @##$^*%^ in my opinion. 'We have a degree, we know your body better than you, we've fixed the problem, so its nothing we've done. It must be YOU!!'. This is why I've been going thru alternatives that I can do, differing ways I can manage. The other thing they came out with was that my pain was stress related, past stress, present stress AND future stress. Work stress and relationship stress were another couple.My actual surgeon asked me if I planned on suing him, which I have no plans on doing. In my view if they didn't operate, I'd be dead. The rebound effect is real and I know it, this is why I modify my medication intake, so my body doesn't become normalised to the meds. The last genius I went to see told me I was addicted to the pain meds and the rebound was why I am having pain. I know quite a bit about addiction and know the difference between head pain and rebound from experience, not a book, Good luck in finding a decent neurologist, one who will actually listen, they can be very difficult to find.

As I said previously pain is a very individual thing. I think the best advice is to 'be aware but not alarmed' I regularly get different pains. At first the wife would jump at each pain, now I wait to see what happens, if it increases then act, but not every pain needs instant attention.

I most definitely understand you finding it difficult to obtain people who may know or be in a similar situation. I too have found this a big dilemma. Lots of information on hydro, but very little specific. A large amount of info for children and hydro, but little for adults and little of specific pain.

Please do stay in contact let us know how Dean gets on after the treatment I've found sharing of experience to be very cathartic both in my own experiences and that of others. I'm often going "...PHEW, I'm not the only one..." This may sound selfish, but when you feel isolated by illness that understanding counts for HEAPS.

Merl1n

hey merlin~ thanks for reply. 1 1/2 more weeks for botox. we cant wait. hope it helps!! neurologist was cool this time, if botox don't help wash u may have a research group using magnets he can get into. hope you are doing well. your in our thoughts and prayers. thanks for listening and being a great influence on us.

Hey Lisa, Counting down the days I bet, my only recommendation is DO NOT put all your eggs in one basket. I too was hoping/wishing botox was the magic bullet, but not to be for me. If it helps, even a little, then this can be the bonus you both need. As for the magnets, I now have a programmable valve which is controlled by using a magnet. I had a magnetic underlay on my bed but after being fitted with this valve had to remove it from my bed. So the magnetic treatments are now a big NO, NO for me. I'm going to have another scan next week and a follow up appointment with the NS, but I'm not expecting any great resolution. I've found having those expectations then not receiving any resolution can be so soul destroying that I no longer develop such expectations, this way I can't be let down. It also means that if there is a success I can enjoy it fully.
Best of luck and best wishes for the Botox being a HUGE success. Let us know
Merl1n

Hey Merlin~
So He got the botox today, said it wasn't too painful, no side effects so far. Neurologist said it would be 2 days to 2 weeks to see any results. So we keep our hopes up and fingers crossed that this is his cure! Deans shunt is adjusted by magnet too but neurologist said this would not effect it. I thought that kinda strange as well. well thanks merlin, I wish you all the luck at your up coming appt.

Hey Lisa and Dean
Well, not to sound rude or insulting but Dean you're one lucky bugger having little to no pain, mine stung HUGELY, brought on a huge pounder of a headache afterwards, that lasted 2 days.
I'm jealous I do admit that eventually there was some reduction in the pain at the back of my head, which lasted a couple of months, but the pressure/pain behind my eyes remained. Since then though the full blown headaches have returned. I was told by the n.s. that the shots were 4 monthly, so now I wait.
The patient just before me came out of the surgery saying she could feel the benefit straight away, which I was real hopeful about. But the n.s. also told me 2days to 2weeks, mine took about 4 days. The n.s. said to that some patients have a bit of a placebo effect and this may have been why that particular patient stated she had an immediate effect.
Hope you get a decent long term relief. I have heard of some really good results from the treatment for some people. Hope you are one of them

Merl1n