Chiari Online Support Group

When the well runs dry


#1

I’m generally a fairly positive and strong person, I think you have to be when living with a life challenging condition. But I’ve really reached the end of my tether and I don’t know how much longer I’m able to keep on top of things. I feel like crying (or screaming if I had the energy) but I know the consequences of doing so means my headaches will increase tenfold. I want to be able to scream how f&/$?d this and physically feel the emotions that validate the way I’m thinking. I know I’m being irrational in how I’m thinking but tired of waiting for specialists to make decisions, waiting because they’re away or unavailable, waiting for appointments. I know this is selfish because it’s not all about me, there’s many others who need their help just as much as me, not to mention they have a right to take time off. I just hate that is takes so much time and I hate that I’m thinking this way but I can’t help it. I want some relief, I want reason to believe all the self help things I implement really do have merit and I will feel the value of them in times to come - but I’m struggling to hold onto the drive and I’m so scared it will all be in vain if I let my guard down.

Please help, please give me some hope to hold onto that will keep me afloat until I can get the necessary treatment. I need to know I’m not alone and it will get better and I won’t feel like this forever. I hate feeling like this


#2

Hang in there, Sallymagint! I don’t really understand why your thread hasn’t had a lot of responses, but it’s probably to do with timing. (Weekends tend to be a bit slower on our communities.) I’ll “pop” this to the top by posting, and maybe that will give it a bit more prominence.

Waiting is the name of the game, especially for people with rare conditions, especially in countries with socialized medicine. (I’m Canadian, and we face the same issues.)

You will get help, you will get better and you won’t feel like this forever. Sometimes, though, it doesn’t seem like it, does it?

By the time you read this it will probably be Monday down under. I hope that you have a good day and a good week.

Seenie from Moderator Support


#3

Thanks Seenie, I really appreciate your words of encouragement. I’m rarely so overwhelmed that I post such a delicate topic, it’s usually me keeping it together and supporting others. It’s been a real challenge feeling so overwhelmed and I’m literally going through the basic motions of surviving each day, hoping things will take a turn for the better very soon. Don’t know how I’m getting through the day - but I am which means I’ve pulled strength from somewhere which is kind of reassuring.


#4

Sallymagint, please hang in there!
Maybe it helps you a little to know, that others think of you, and wish you the best. I know waiting is often the worst part of the whole deal. But remember you are waiting for things to get better, and they will!!! Take strength from something you love to do, or someone you love. Tell them how you feel, they need to know that you feel on some days like s…! Sorry, but there is no other word for it. Be strong, you can do it! I hope everything is getting better real soon for you! Hugs :slight_smile:


#5

It is a frustrating process. I hope you can find some peace and rest during your time of waiting. It is so hard. It feels good to vent sometimes about your frustrations and sometimes even have a good cry, even if it will spark a migraine. Keep your head up and I wish you all the best!


#6

Thanks Blume, its comforting to know I’m not alone


#7

Thanks nsa19 I never realised that crying, or expressing many emotions for that matter could be so difficult. Living with this is the hardssf challenge I’ve faced in life. It’s really really tough and I’m constantly amazed that I get through each day. In the bigger picture enduring all these things as hard as they are, leaves me mindful of the challenges of others. When I get to a better place and see the light at the end of the tunnel was not that of an oncoming train but was shining the way forward, I hope I can be the voice of reason for others faced with despair. Thanks for your support


#8

Praying for you Sally. I’ve felt scared, depressed and felt like no one understands what I am going through…I feel so alone at times dealing with all the issues of Chairi. No one understands besides you and everyone else on this site. It’s only been about 6 months since I found out what was causing a lifetime of pain and problems. So glad I finally have an answer! Now trying to stay healthy and taking the best care of myself, so I can have some pain free days.


#9

Thanks tinaj I appreciate your support. The only comfort I take from people not understanding is that at least they’ve not had to suffer the destructive nature of Chiari symptoms. I’m glad I can confide in people like yourself, it can be a lonely road otherwise :blush:


#10

Hi Sally, it is important with Chiari that we adapt our lives to allow for rest. It also helps to know what not to do in order to prevent pain triggers. I find too little sleep and using the wrong pillow is a no-no. Standing stationary for long, bending neck backwards to work above my head etc. I teach. At the time of diagnosis 32 years ago I was battling very badly. So much so that I had to stop work and rested and took it slow for two years, after which I found life was looking up. My decompression was in 2011. I now teach 2 1/2 a week which I cope well with, especially as I teach art which is a stress free subject. I use anti-seizure meds Remeron and Lamictin to help prevent headaches which works wonderfully. Be carefull of pain meds as you could pick up kidney damage in the long run. I hope you get to see a specialist soon. Here in South Africa it was easy to see a specialist get the tests done quickly. All the best for you.


#11

Thank you Flerrie for your words of wisdom. It’s definitely been a learning curve figuring out what triggers symptoms, how to manage pain and how to cope with breakthrough pain. I’m certainly not a pro but I’m better than I was and learning all the time. Not being able to sleep is a killer especially when our bodies healing occurs whilst we are in slumber. When I’m physically and/or mentally exhausted, lack of sleep makes everything appear much worse. I try to be mindful of this when I feel overwhelmed and can’t see the sky from the clouds. My patience, expectations etc… become more sensitive, combine that with more pain and exhaustion and it’s a recipe for disaster haha
I take a lot of meds for pain including anti seizure (Lyrica). I don’t like taking them but it’s a necessity ATM. Hopefully after surgery my pain will be much more manageable and meds will be less. The wait for scans, appointments, surgery is horrible and I try to remember getting stressed about it doesn’t make it happen quicker in fact it makes it seem longer as it impacts my state of wellbeing, pain serms worse and the cycle begins again…
It certainly helps to be able to vent to the wonderful people in this group and I’m so appreciative for everyone’s support. You have all experienced Chiari and the complications it presents and your support and words of encouragement are invaluable.

I’ve never met any of you yet the support and understanding of those behind the keyboards is tremendous. To be able to reach out and receive help from those with the greatest level of understanding when times are at their toughest and hope has faded is truly is lifesaving. Thank you from the bottom of my heart :heart:


#12

Sally,
Wow. Can I relate! When you are in pain, time crawls like a snail. For ten years before I was diagnosed with Chiari’s, my only relief was banging my head against a wall - which kinda served to distract the pain for a moment. I also spent the whole day sprawled on a couch watching TV - 'cuz I couldn’t function enough to do anything else. Lost my job. Lost my family (they thought I was making it all up because you can’t SEE Chiari symptoms. They kept saying, “It’s all in your head.” Well… it was!)
When I finally was diagnosed, the neurosurgeon who I went to was so booked, Do you have a decompression surgery scheduled in the future - at least something to hang some hope onto? I had to wait 9 months for my surgery. Again, those 9 months were the SLOWEST months of my life. I never thought they would end. Still - I had to hope that things could get better. It’s hard to keep going without hope. We all need "a light at the end of the tunnel."
Hope has to carry you through even after the surgery. Healing is not instantaneous. In fact, I didn’t start feeling any benefits at all until several months after the surgery. But - eventually, healing did happen. I never reached 100% recovery, as Chiari’s caused permanent damage to the brain stem. But, I am SO HAPPY to have at least reached 75% . Five years post-surgery, stress of any sort - physical or emotional - can bring ALL my Chiairi symptoms back with a vengance. Usually a bowl of popcorn (popped with coconut oil - super good for rebuilding nerve and brain tissue!) - and chocolate - can diffuse the stress. I hope you’ve found a good “de-stresser” that works for you. Even a good cry can work! (Although chocolate works, too!)


#13

Thank you Beth, no date for decompression yet as I have to have a pain stimulator removed so I can have MRI scans which up until has also meant that a clear picture of what’s going on can’t be ascertained. They know I have 16mm Chiari but he seems to think Syringomyelia is playing a part. The CT scans I’ve had don’t pick up Syrinx, tethered cord ect… so although it’s not great to remove the pain device which does help there’s no clear way forward without knowing the extent or possible damage from the condition. Paralysis is becoming bad which really scares me particularly when there’s been no reason as to why it’s happening. MRI will hopefully bring a bit more to light to the picture.

I’m terrified the paralysis will get worse or be permanent and appropriate treatment needs to happen asap. This makes me even more eager to get things happening. Time really is of the essence and I can’t help but think each day that goes by is another day of possible long term damage. The changes in symptoms have been dramatic in the last 6mths and have happened very quickly. For 2 yrs after diagnosis my life wasn’t so severely impacted but now it is very obvious particularly to people who see me less often, they get a shock.


#14

Dear Sallymagint,
I really feel for you and understand how you are feeling.
I am 59 years old and, was diagnosed following a car accident in 2012. I did not not know I had the Chiari Malformation like you until an MRI had been done. I was not told either at the time. It came up on a check up for another problem when I confessed to a GP that I was not feeling myself and something seemed to be wrong with me. I am also a very positive person who believes in mind over matter and, I thought by being positive I could overcome anything? Later in 2014 I was told I had also developed a Syringomelia albeit only 3mm. At the time I lived in Spain and the Neurosurgeon I was seeing said I should consider surgery. I did not do this as I was so scared and after speaking with him at length and being told, there was no cure for this decided I would wait. I am now living back in the UK and have a referral to Neuro Consultant for the 22nd September. My health is in a real mess. I hurt everywhere, severe back back , neck and shoulder pain and although, I try to continue as normal every day, the joint pain and headaches are beginning to make me feel that my life is disappearing as I live it. I have decided that if the next MRI shows a significant change in the syringomelia and, I have the chance of this horrible surgery, I will have it done. I am frightened, even more so because I am a retired General Nurse and possibly know too much. I get so frustrated at trying to continue as normal especially as I am an extremely active person, my husband trys to be understanding but I feel for him too, having to put up with my bad days and, you never know when that is going to happen. I will say a prayer for you and really do understand, where you are coming from.


#15

Dear Sally,

You may still have a chance at full recovery! No two Chiarians are the same - and I have met 60+ year old folks who’ve had the decompression surgery and recovered 100%. I recovered 75% - and I am SO rejoicing in that 75% functionality.

I suspect why you are having the ‘paralysis.’ Every 4th day, my paralysis returns for 24 hours, causing me to be a total vegetable. Then, after the 24 hours - I return back to normal. I’m thinking it’s because the part of the brain that is actually causing the ‘plug’ in Chiaris is the cerebellum. That’s the very bottom of your brain just above your brain stem. The cerebellum is in charge of your body’s coordinated movements. Your whole muscle control! My neurosurgeon actually said he cut out pieces of my cerebellum that was oozing out under my skull. He said I wouldn’t miss it.

Actually, that’s why I think I have re-occurring paralysis! Because pieces of my cerebellum are permanently missing - I’ve lost that piece of muscle coordination. During my ‘paralysis,’ I get so massively clumsy. Can’t tie a shoe, can’t walk straight (I walk like a drunk). Can’t pour water out of a pitcher. Simple tasks get momentously difficult. And frustrating. I get a short fuse - get really mad at things I can’t do. That’s why on my ‘paralysis days,’ I lock myself in the house so no one can see rage.

However, I’ve met Chiarians who recover fully from paralysis after decompression surgery. So, there is always hope. My 75% functional days are absolutely fantastic! I’ve gotten into competitive race-walking, and am one of the best in the nation. Who knew! It’s so freaky that on one day, I’m a nationally competitive athlete - and on the next day I’m a total vegetable! (Stress can really bring on the paralysis at any time - and very quickly. Any emotional stress, physical stress - and within seconds, I’m a zombie!)

I do hope things move quicker for you. It’s NO FUN being miserable. In the meantime, enjoy some chocolate (!?)


#16

Thank you Beth, I can very much relate to what you say about the paralysis coming and going. The degree definitely varies and when it’s at it’s worse I am grumpy, on edge, overwhelmed, tired, weakness in hands and feet - can’t hold things, send things flying across tbecroom because I think I’ve got hold of them or lack of strength. Again I’m finding myself comforted by hearing another story of someone experiencing similar symptoms - not that it’s nice you’ve experienced any of this at all but none the less it does give me some reassurance. I’m hopeful I will gain some degree of functioning back and I think I have to hold onto that hope, it’s important heading into surgery. The level of paralysis has definitely got worse over time and the relief, when it happens is certainly not like it use to be. It is probably why it scares me so much and makes me anxious to get things moving. I just have to keep reminding myself they are working towards it and the wait just seems much longer for me because I’m living with the symptoms 24/7.
I’m really feeling so incredibly blessed to have the support of everyone here, it’s amazing how Chiari warriors behind a keyboard who I’ve never met can be my lifeline in really tough times. My family and friends are great but that level of understanding is not there, and I don’t expect it to be they don’t experience it like I do. It’s so nice to have people just get it on a level that you know is closest to how I’m feeling. Thank you again! :kissing_heart::kissing_heart:


#17

Thanks Lydia, it’s so hard on our loved ones and as I say for them to have a true understanding on how challenging and disabling it feels they would have to be living with it 24/7. I would hate to think anyone I loved would have to endure the debilitating ways this has affected me.
It’s hard to know what to think about decompression and I’ve gone over and over it trying to figure out whether I’m doing the right thing. The answer was actually very clear when I asked myself this question ‘Do I want or am I able to continue living like this?’ It was like a lightbulb moment. NO, I can’t. And that was the deciding factor. It then no longer became important what others thought be that medical, family, friends, anyone. It’s me that has to live in my body and it’s me who faces the daily (in some case hourly) challenges. I am not strong enough physically, mentally, emotionally to live like this for the rest of my life. I have to take the step, hope and pray that surgery will help improve my life in some way. I’ve done everything I can possibly do with self help strategies to improve and maintain my wellbeing - I’m confident I really have done everything. As hard as it is, I have to rely on the help of a neurosurgeon now, there is no other way. Of course I will keep using self help strategies as these are important and do maintain a certain level of wellbeing. Coming to this conclusion was a huge relief and whilst it’s a long road yet, I’ve changed direction and that gives me hope that wasn’t there before.


#18

It’s amazing, isn’t it? the power of words from people who truly understand what it’s like to have this condition is incredible. I am privileged to be able to visit and work on all thirty of Ben’s Friends rare disease support sites, and I see the kindness of understanding strangers every day, and the power of their words never ceases to amaze.

Stop and think: having chiari isn’t new. And yet, up until not very long ago, all of us with rare diseases would be totally alone and isolated, very unlikely to ever meet another person who could understand through personal experience.

We are so very fortunate that technology and Ben’s Friends make all of this possible.

Seenie from ModSupport


#19

No truer words spoken Seenie, I don’t know how I would have got through without the help of this support group and a Chiari Australia Facebook group… and I truly mean this. I have dealt with some traumatic things in my life but nothing has affected me as much as the debilitating symptoms, the onlnown fear and being such a minorit. In terms of seeking understanding, knowledge and treatment from others be that family, friends, medical personnel. It is a lonely and scary journey sometimes and I’m so grateful I have Chiari friends like yourselves to help me along the way. I was very humbled by the level of support from friends when I eventually told them what was wrong and I don’t devalue that for a second. But knowing that the people here have walked in shoes similar to mine and can offer stories of real life experiences, stories of inspiration and hope has been lifesaving and given me the strength to keep going :grinning::grinning::grinning: