Debilitating health issues & how to deal with them
Posted by: kfactor
26th Aug 2011 10:15pm
I suffer with a lot of different and debilating health issues and I was wondering if there are others like me, and how they deal or cope. I have had chronic migraines my entire life, never a day without pain, and now am experiencing seizures and blackouts. I have scoured the medical profession and tried alternative therapies, with little to no success. Is there anyone who can offer a suggestion? My family have had to pay the price of my illness, and I appreciate their support. I don't think I would still be here if not for them. I am interested to hear how other people function, because I am unable to work outside the house, am medically unfit to drive, and have very little energy to do the simpliest of tasks. I look forward to getting some feedback on this topic.
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Comments 35
Anonymous
There is a lot that can be suggested. From, on the dietary side to help you, you need to go back to the basics water to drink and nuts and veges to eat, veges to be taken raw so that the nutrients to help your nervous system. On the spiritual side, you need to know Jesus for he is the greatest healer. Bring your spirit to be right with your physical you should be right
Anonymous
There is a lot that can be suggested. From, on the dietary side to help you, you need to go back to the basics water to drink and nuts and veges to eat, veges to be taken raw so that the nutrients to help your nervous system. On the spiritual side, you need to know Jesus for he is the greatest healer. Bring your spirit to be right with your physical you should be right
florel
Have you tried glyconutrients, they are completely natural and they work by helping your body to communicate properly between the cells enabling it to function properly and heal itself as it was designed to. A good chiropractor can often help and the other one maybe worth trying (not sure about it yet) is bowen therapy
careful
I am so sorry you are suffering so hard, if you are in Brisbane their is a place called Pain Medicine at the Mater Private Hospital where they have brillant Doctors and don't let the word private frighten you as I am on a pension and could afford, guess depends on pain.
Daisy
I have a family member who has been treated for years as an epileptic because of seizures. Her life was on hold as she was afraid of leaving the house and like you, not allowed to drive. Recently she was treated by a chiropractor who diagnosed neck problems and she no longer needs medication and can drive again thereby giving her back her life.
kfactor
Hello Daisy, how wonderful that your family member has found her life back! I'd love to know the name of the chiropractor who helped her so significantly! It is true that your life does go on hold when you have problems like this. Most people turn their backs on me, whilst others are more understanding. One friend made a comment to my husband that I just didn't want to work anymore! She couldn't have been more wrong! I would love to be back in the work force contributing to the bank account, however I know my limitations so it is hard. I am afraid of leaving the house, and have had to call my husband home from work on more than one occasion. Luckily he is very supportive, and understands how frustrated I feel, I appreciate your response and I hope your family member continues with her good health.
jojozep
Hi kfactor, I am very fortunate to not be as challenged as you and not sure if I can help as unaware of all your issues, but have you tried a Bowen therapist for the chronic migraines? Reason why I mention it, is hubby is a very good one and has helped numerous people (including me) with theirs, be it short or long term. But like all practioners - you need to find a good one. Hope you get some relief from some of your health issues. All the best.
jojozep
Hi kfactor, have got some info for you but am reluctant to put all the details through the chat room so have been in contact with Cafestudy and passed on my phone number for you to call if you want. The best time to call over the next few days will be of a night time. Take care and look forward to talking to you soon.
kfactor
Hello Jojozep - thank you so much for trying, I look forward to hearing from you. Much appreciated.
jojozep
Hi kfactor, just a quickie to let you know I haven't forgotten, just too busy for my own good :-) But have passed on the therapists request to a couple of very good therapists but they do not live anywhere near you and are trying to track someone down for us. Will keep you informed.
Take care
jojozep
Will chat with hubby tomorrow, as he is asleep at present and will get back to you. Sleep tight
kfactor
Hello Jojozep - I live in Alexandra Hills Qld. it would be wonderful if you could recommend someone. Thank you so much
jojozep
Hi kfactor, it will depend on where you live. If you are able to give me an area I will chat with hubby and we will try and track someone down. All the best
kfactor
Hi Jojozep - I have tried Bowen therapy and found no success, maybe you could recommend someone. It has taken 6 and a half years for my physiotherapist to be able to gently gently touch my neck. Because all my body is affected and so hypersensetitive, it is really difficult to find the right person. Thank you for replying and I appreciate your time. Take care.
Anonymous
my neice went to a chiropractor and her migraines disappeeared, she also feels heps better all round.
kfactor
Hi D, I've been to a chiropractor who found a problem with nerves being crushed in my neck. He sent me to a neurosurgeon who performed 2 operations on the neck and head which has aggravated everything. I'm so glad that it worked out for your neice and I hope she continues to feel better.
ozziedigger
I feel sorry for you k.I`ve had migraines and pain,but you seem to have lost the jackpot.I can only speak from experience as I`m certainly not trained.If i couldn`t get relief or diagnosis from the medical pro`s,i would keep annoying them until i did.
If i still failed i would look for the best eastern(japanese,chinese,burmese etc)
instructor of martial arts/internal meditation to teach you how to channel your energy and blood flow around your body system.Also ,by meditation to move your pain from your brain sensors to somewhere outside your body.
This does not happen overnight,but each lesson learnt is a huge step towards
controlling your body.
I wish you a pain free future.
kfactor
Hello Ozziedigger - I think champ is a bit strong! It was only an MRI. It was interesting writing out the lists of positives and negatives - I had to do this when I was an in-patient in the multi-disciplinary pain clinic at the Royal Brisbane Hospital back in 2000. I was sent there after a routine blood test showed high level of liver disease prominent for an alcoholic - I don't drink. This damage was caused by years and years of medication. So I went into the clinic for 3 weeks, using it as detox - it was horrific. Not only did they feed me morphine 24 hours a day but put us in the burns ward. The sights I saw were sobering to say the least. But there was this little physiotherapist who said that I had to take the blame for my condition of being addicted to perscription drugs. Needless to say we didn't get on, and she also blamed me for my family problems as well. I thought I was going to be helped, not attacked, so I signed myself out against medical advice. 2 days later I was readmitted through the emergency department and once again tried to abide by their teaching. This time I was fortunate to find a physcologist who spoke with me, not down to me, and actually listened. Yes there are issues that needed addressing, and yes there are ways to do that without medication. She was attempting to teach me about meditation that was right for me and it was a little unorthodox but it worked. Unfortunately I am no longer in touch with her, and I really need to be. She taught me that not every problem is one layer, but multi-layered like a beautiful river stone she gave me. During my time at the clinic I managed to get off all the medication I had been on - a fantastic feat however now it seems I'm back on the same merry go round of medication just a different coloured horse. And every now and then I take out the information I kept from the clinic and go through it. It boils down to -A - Acknowledge, A - Accept, A - Admit, A - Adapt. I know that I enjoy my good days, and I make the most of them, positive thinking goes such a long way. I cannot tell you all how touched I am that you have taken the time to respond. I wish everyone good health and happiness.
ozziedigger
Congratulations K, THAT IS great news,it made my day as i`m sure it did for many others in cafestudy,not to mention how The Champ (kfactor) felt.
I know about MRI scans,the first one i never had,they pushed me in the machine,
I remembered my old fear of claustrophobia,and i yelled and yelled until the nurse said over the speakers "only a couple of minutes left",but i kept yelling and i was out in an instant.No scan results,2 valium and 2hours later,same thing.Then i had a serious talk with myself and the next time was fine.I think everyone is weaker until they take control of themself.But it`s not about me(and don`t use me as an excuse lol),as i am ok.You are too now K,once again congratulations and use some of that personal strength you have in abundance
to catch up and join your family and repay them with shared happiness.
kfactor
Hello Ozziedigger, I don't think you are a fool at all, to be honest, your reply was brilliant. I did make the 2 lists, and as expected, the negative one truely was so much longer than I thought. I am a big believer in the power of positive thinking - I may not always be able to achieve it, but it is amazing how the brain works. I went for my MRI on Tuesday afternoon, and I wasn't looking forward to it, the last time I had one, I had a seizure in the middle and wasn't able to complete it. This time as they pushed me in the tunnel, I tried to clear my mind of everything negative, and concentrated on a pleasant memory. The memory was of my husband's face when he opened his birthday present from me - the light in his eyes was magic. Time passed so quickly and next thing I knew they were saying it was all over! I don't even care about the result - I did it!!! I made it through something without something bad happening. It was such a rush! You would've thought I'd won the lottery. All I knew is that I managed to make it through the examination. Power to positive thinking. I'm taking baby steps, one day at a time, hoping each day to achieve a little more back. I accept my limitations however I'm not letting them define me. Here's hoping we can all get better. Thank you for your words - they were true and powerful.
ozziedigger
Thank you for your reply K,but i don`t want to leave it there.
With the risk of people thinking i am a fool,(the least of my worries),I want to make
some observations about self control.It revolves around the half full/empty glass.
make a list of the positive thoughts,and another of the negative thoughts your brain is feeding to you.I would bet,if you are honest with yourself,the negatives is the longest list.
If,as it sounds,you are bombarding your brain with negative thoughts,eg I can`t do that--I`m frightened---I will black out if etc,) you will be at a big disadvantage
at dealing with life.
I think if you can(and you can),turn these negatives into positives by taking back control of your brain and control some of the problems you have,do it one at a time.
You have the rest of your life to achieve this.Start now and have an enjoyable life.
kfactor
Hello Ozziedigger - Thank you for replying to this topic. I have gone to such lengths trying to find an answer or at least a reason for all the problems I'm experiencing. I know that western medicine is still developing in all different areas, however not in mine it would seem. You spoke of alternative therapy, I have had very little success in that area as well. Meditation I find difficult, as the pain is so overwhelming, that it defeats the purpose. I have tried to distract myself, gardening, just being outside, in the pool, however I was terrified one afternoon last year, I had gone in the pool, I suffered a seizure just as I got to the step, but I couldn't get out so I clung to the side until my husband got home from work. I couldn't believe that could happen, I wasn't stressed, I love the water, but now I'm very wary of being on my own. I know that sounds really girlly, but the fear is real and it is scary. I will continue to meditate and hopefully who knows, maybe one day I can say - Now that was a good day! Take care and thank you.
drross
have you had an echocardiogram?? a patent foramen ovale is a rare cause of migraines/seizures ...
kfactor
Hello drross, yes I have had an echcardiogram which indicated no abnormality or problems. At the moment I have just had an MRI of the brain. The blackouts and seizures are the most deblilitating problems as it is very hard to plan things, appointments, day to day chores. Here's hoping they will find a solution soon.Thank you for replying I really appreciate it.
Cajun Spice
I have a medical list a mile long and 3 which cause pain and migraines almost ALL the time.
Hyperacusis, where any sound--even a whisper can be extremely painful. In my case nothing can be done about it. I just have to learn to deal with it and find ways to make things easier, like use plasticware, instead of silverware, as the noise of siilverware on crockery is excruciating.
For all my life I have had a sensitive scalp which also leads to migraines. My chiropractor suggested it could be the natural chemicals in foods--Salycilates and Amines. They can build up in your body and wreak so much havoc. The RPA Hospital Food Allergy department put out a book explaining it all and explains which foods are High Medium or Low with these chemicals, and has recipes and lots of tips etc.. It can be quite hard to pinpoint exactly which foods are the culprits for each person.
The last one and I am still going through treatments to work out what it is, is soft touches to the skin, which does NOT hurt, but it instantly gets extremely painful and it radiates around that area. Not any of the Neuralgias's but most likely a nerve thing all the same. I might have to go on medications which are the same ones used for mental illnesses etc, but I will REFUSE that as I was misdiagnosed many years ago and put on them before and for a person who could / can eat ANYTHING and NOT put on a gram, ballooned up in weight. I lost the weight but still not my original body.
Those 3 on top of all my other medical issues is just too much and I can not even work no more. There is another pain issue which is psychological and physical, but I wont go into that as it is too intimate. I just live each day as it comes and am not dealing with it all at all. My GP does what she can and I do what I can and I am still waiting to get in to see a psychologist to talk about the pain and dealing with it.
Even my daughter hugging me or kissing me mostly ends in excruciating pains. Sometimes I have to ask her not to talk or make any noise, as the noises hurt so much. That is not right or fair.
Kfactor, we have a lot in common, but I don't black out or have seizures and I can drive and I am 39. I was taking Nurofen every day, but had to stop as that is not right either. I am glad you have all your family for support--that I do not have. What keeps me alive the most, apart from other things is my PRIDE !!!! and the HOPE of knowing one day I will have more answers and treatments--or cures
kfactor
Hello Goddess, I can't wait to talk with you as I feel you understand better than most people would. It made me sad to hear of your ailments, especially when your daughter's hugs hurt. I think you sound like an amazing woman, NEVER GIVE UP & NEVER GIVE IN!!! No-one can take away your pride unless you give it to them, and you don't sound the kind of person who would allow that. On top of my problems I am going through menopause which is just another cruel addition to an already over - loaded body. I get so tired all the time. Everytime I try to fight, it's like taking 4 steps forward and 19 back. I haven't given up but I feel like giving in. Hope is what keeps me going, and I hope you find your answers soon. Take care of yourself.
kfactor
Hello Chymereve, Chronic pain is just that - an enormous pain. I have lived with these migraines and chronic headaches all my life - I remember my mother taking me to the family doctor and in his wisdom, told her I wanted attention being the youngest of the family. I was 4 or 5 years old and I called him a Bad Man for not listening. My parents never grasped the situation so I went in search of a possible cure or at least tell me what is wrong. I saw so many doctors, neurologists, neurosurgeons, physicatrists all with differing opinions. One of the specialists told me to have more children!, another said to buy his book on managing pain, another called me neurotic and a fake!! It seems that if the medical profession cannot understand your condition, they put you in the too hard basket and shuffle you to the next tag team. I do suffer from depression and anxiety attacks, surprise, surprise! It is so interesting reading other people's replies as we all cope in our own way, but sometimes on a really really bad day, I admit, I don't cope, and sometimes my thoughts go very dark. Luckily I have a supportive family like you do, and I don't think they know how much I appreciate them. I am very interested to hear how you get along and would be happy to keep in touch. Take care
Anonymous
You poor girl, chronic pain is such a "PAIN" I was sprayed with gorse spray and ended up in intensive care, but they treated me for hypertension, I developed asthma from the medication, shortly after viral pneumonia and then ME with fibromyalga. I have struggled with chronic pain, brittle astma and chronic alergies ever since. my daughter - who is a recovery staff nurse by the way - screams at me that I'm nuts and neurotic, and she will arrange psychologist and psychiatrist appointments for me. Fortunately I have had supportive and careing doctors, and not one has ever suggested I am psychologically unstable, though it was suggested that depression medication could maybe help with the pain, I pointed out that I was pissed off, not depressed! and they agreed, I treated myself like a baby for years, gradually introducing differant foods, and REALLY listening to my body, on the whole my life is now better than it was, I still have brittle attacks, but I cant controll pollen garden sprays fumes ect ect. I really wiish you well. I am trialing a new product, perhaps you could email me privately and I'll keep in touch and let you know how it goes. Sherryn
mossie
Have you tried essential oils, namely lavender, basil. They used to help me short term but now I take a prescription called Minax which is a beta blocker and I take 1 twice a day and it keeps my migraines at bay. I used to have lumber punctures to relieve the fluid pressure from around my brain.
my diagnosis is actually called 'benign inter cranial hypertension' which means I get a fluid build up between my skull and brain causing pressure and the fluid has to be released and lumber puncture is the only way to do that OR a permanent shunt in my head with the fluid being released into my stomach. I am so grateful this didn't happen and the Minax worked for me.
I hope you find some relief soon
kfactor
Hi Mossie,
I've found that I cannot tolerate any of the essential oils, in particular lavender and vanilla. They set off a horrific response, my head feels like it's going to explode. I actually run through the perfume section of any department store, I have to pick out my husband's aftershave and deoderant - it's that bad.One of my diagnosis is that I have an Arnold Chairi Malformation - where the part of the brain has slipped down into the neck. I had an operation to decompress it in 1988 and unfortunately it just aggravated everything. I have endured more treatments, injections into the head, radio frequency treatments. I've had the lumber puncture treatments but nothing seems to help. But I will ask my doctor about the minax - I don't think I've ever tried that prescription. Thank you for your time and information, I look forward to telling you how things work out. Take care.
buzzybee
I suffered severe migraines from the age of 10-----------tried everything.At age55 my daughter suggested a sleep study because I snored sooooo badly. GP agreed---had study---very severe sleep apnea---went onto CPAP machine-----I have never looked back. I am now 64 & at last have a LIFE. The sky was bluer the grass was greener after my first night on CPAP. I had tried everything possible before hand. Worth a try maybe-- a sleep study
buzzybee
Hi kfactor,
Do hope you may find an answer for you soon.I found nothing but CPAP machine helped me. After 55 years it is lovely to be able to be relied upon. Last year I was even able to do our 1st overseas trip to China for 3 weeks. I would love to hear how you progress after next sleep study,Take care from Buzzybee
kfactor
Hello Buzzybee,
I read with interest your suggestion of a sleep study, and at the moment I've completed 1 sleep study which showed that I have obstructive sleep apnoea. This means that my airway gets blocked from time to time while I'm asleep. I have tried the spray under the tongue type of treatment, and now am using a nose plug. However I still snore and I wake up everyday with a terribly sore throat. I'm booked into my next study in October - hopefully they can help then. I'm so happy that you are now migraine free, and I look forward to the day when I can say the same. Take care of yourself and thank you so much for replying.
Debz
Hi kfactor, I know how you feel as I am in the same boat, I cannot work outside home and finding work to do from home is difficult, my migraines have got worse over the past 8 years and I have been to so many doctors, healers etc and nothing seems to be helping. I have an appointment with the nerve clinic, as they think it could be part of the problem, in October, I am not sure where we will go from there if they find nothing wrong. Some of the alternatives doctors have suggested have terrible side effects and after looking into them more, I am not prepared to put myself or my family through them. Like you, I would love to hear how others handle them.
kfactor
Hi Debz, please don't despair, you never know the nerve clinic may be just the place for you to go to. I was told by a manipulator/chiropractor that I had nerve damage in my neck where the nerves were being crushed. From there I was sent to the neurosurgeon who proceeded to do 2 operations on my head which aggravated the situation terribly. However he was the first one to find an actual physical ailment, all the others told me that I didn't have any problem and I was just seeking attention!! I don't think I would have put myself through all the hoops just to get attention. I'm sorry to hear that your migraines have worsened over the past 8 years, have they worked out why yet? A very good friend of mine keeps saying to me just breath, not each day is the same, be open to opinions, take advice you deem reliable and dump the rest. I would love to hear how you get on. Good luck and everything will be fine.