Hello
We've been off air for a little while due to Tommy struggling away day in and out and once again the feeling of isolation is very stark and over powering. Tom is still like the boy in a bubble .
His world consists of this house and me but at least some of the local services are trying very hard to get him out and about. He finds this brilliant at the time but a couple of hours later he is exhausted and often complains of pain. So what do you do? sit here at the four walls or make him do things. Try to be positive but live in fear that it may result in a major attack??. I tend to do the latter and remain "realistic" If I hear that word one more time then I will definatly scream albeit silently. Tom is a lovely kid who sees his friends and siblings pass him by. So I will be realistic and continue to try and find someone that understands him andwill help break this vicious circle!!
I'm am sorry for this vent but it has been brewing and the frustration of many meetings and nights /days/ years of broken painful sleep( Tom not me) have kinda crept up on me there,but I'm not sorry that I have Tom. Maybe that has been my problem too busy apologisisng to people for bothering them!!!
Well that's it for another nine years ...or whoever says Tom and realistic in the same sentance!!!
Regards
Sarah M
It is a horrible feeling to be isolated due to chronic pain and illness. I'm sorry you and Tom are going through this. It isn't fair, and you and your family certainly didn't ask for this hand you have been dealt. Sometimes it is very difficult to be realistic all the time. It is OK to vent, we have to get our feelings out somehow. SharePosting here is one way to do so.
I'm wondering about Tom's medication change. Have his doctors suggested verapamil or lamotrigine, or acetazolamide for SHM? These three meds where discussed for both FHM/SHM at the headache conference in June by Dr. Anne Ducros from France.
Hang in there and let me know if you would like some more information.
Thanks Nancy,
I feel sometimes a bit guilty when I do vent but sometimes it feels great getting it out.
Tom has tried acetazolimide before as it was thought he had benign intercranial hypertention prior to our first visit at the headache clinic. At the moment we feel the imipramine has not helped but know it can take up to three months or more before it can kick in properly ( we are on week ten- not that I'm counting!!). It has been suggested that he uses naproxen which is a totally new drug to us and at the moment there is a debated going on to what dosage he should be given,. Thankfully the flunarizine has helped with the attacks but the background headaches are becoming very disabiling. Tom , himself has tried to remain positive but eveyone is starting to notice that the facade is starting to slip. There are days where he seems very low and being on an antidepressant you would have thought it might help his mood too. We feel that as Tom has many triggers and other conditions such as hyperaccusis, then thing are doubled in their intensity.
The greatest feeling whilst going through this is that we are not alone and can be quite comforting to see familar names popping up with advice or even their own "vents". I somehow remain along with Tom's dad very positve that one day there will be a cure.
We cannot help but wonder if there is more going on with Tom , though and will continue with the good communication we have with our professionals, so we are lucky!!
I am going back onto the site and have a look at the meds you mentioned.
Thanks Nancy ... might just be Sarah m but its nice to know someone is out there!!!
Hi Sarah for a nine year old your son is taking a powerful trycyclic antidepressant. I'm not trying to alarm you, but this medication does contain a black box warning stating an increase risk of suicidal thoughts in children. HERE is the information. Are there better options for your son then this medication? Of course I am not a medical professional, just want to make sure we all have the information we need to make good, safe decisions.
Let me know how you all are doing, ok?
Hi Nancy
Thanks for your reply, we have noticed that Tommy is progressively worse.
He was put on the drug after topiramate was stopped after it accerbated syptoms of night terrors , memory and concentration problems. The background headache became worse and he calls this his pin pain and it is seperate to the hemiplegic pain. Ironically Tom has lost nearly a stone in weight since Christmas and his mood has dipped considerably, we are due to see our local gp today ( Friday ) He is also experiencing worsening still of his memory (short term) and night terrors. The saddest thing was when the pain was obviously worse and he told his daddy that he did not want to do this anymore. He is very moody. aggressive and tearful.
The impramine was for the background pain to help control it.
We are very worried and after your message can understand why. He had been tearful and aggressive before but not as bad as this for a long time.
We will let you know the outcome . Thanks again Nancy take care
Hi Sara -
It sounds like you are having a real struggle. The only thing I can imagine worse than being sick is your child being sick. Some thoughts though - topomax stays in the system a while - so the side effects may still get better.
Also - as I wrote in another post - I have had some success with alternative treatments. Accupuncture helped with the background headaches - though I thought it was a crock at first and tried it just to say I had tried everything - imagine my surprise when it worked!
One other thing - though it sounds like you are working with a lot of professionals - I have found a LOT of help using a cognitive behavioral therapist. I was homebound - because of Migraines - but through my therapist who is EXCELLENT - have started having a life again. I'm not migraine free, but the fear of migraines and other behaviors I had learned similar to pavlov's dogs were triggering some of my headaches.
I searched a long time for Meds to help - and am still on that hunt - but these other therapies have helped a lot! AND there are no side effects! Funny thing is my 1st neurologist referred me to this psychologist and I didn't go because the sickness wasn't in my head. I wish so much that I had gone because I think I could have saved myself (as well as my family) a lot of pain and heartache. It also sounds like with the increased depression and aggressivness he could benefit in a lot of ways. I would look for a cognitive behaviorist though - I tried regular therapy and talking about how much stuff sucked and crying for an hour just triggered a headache!
Forgive me if you've already been down this path - its just one a lot of MD's don't suggest and I think Migraineurs are hesitant to try since the pain isn't psychological. Cronic pain does have a lot of psychological repurcussions though.
Good luck and I hope you find some answers! I'll keep you and your son in my prayers!
PS I have a bad time with nightmares and have found sleeping with animal planet or discovery channel on in my room (something nice and soothing) keeps the bad dreams at bay.