Hi I am a new user looking for support pages amd people to talk to. Christmas Day 2020 I collapsed and was rushed into hospital finding out one of my four aneurysms bled out. Was again rushed into different hospital where my head doctor performed surgery and coiled it. Plus coiling another one behind by right eye. He told me I have two more in lower back or brain. I’m home now with being told live calm go back to my life no stress. Well I’m finding I can’t help but stress. I don’t remember when I slept last. I’m scared to close my eyes. Three years ago I was diagnosed with these and he said then they were small would be monitored well one decided to bleed two weeks before my mri. So who says these ones won’t grow. To even think he said I had a 27% chance of survival after bleeding. I’m finding it difficult to live at all. Knowing I have two more not coiled any suggestions on how to live a some what normal life. I’m scared to move. I’ve read so many stories and amazed how many people are in same spot as myself. My blood father passed away from this at my age so I am trying to do everything right. Which I don’t no what right is half the time. I don’t sleep and have other health problems which give me pain. No idea what I can take at night to help sleep and pain. Doctors seem to wanna just push more antidepressants which I take one already. My doctor doesn’t believe in vitamins etc. Looking for advice on natural stuff if anyone has used anything. Melatonin I cannot take. I was told to try cbd thc edibles. But again scared. Has anyone tried these things. I sleep For one hour here two hours there and it would be really nice to have an eight hour sleep. In addition to looking for advice it sure would be nice to just talk to people in same boat helps for sure.
Don’t you just love that, ‘Ohh you’ve got this thing in your head… …But don’t stress’ I was told something similar. How on earth can they give us partial information and then say ‘…But don’t stress’. The very first thing we do is STRESS and that’s normal, but we need to get past that ‘Stress’ point. I ‘try’ to get to a point of acceptance. I say ‘try’ because my symptoms (and the stresses involved) fluctuate. On a good day, yea, that acceptance can be easier. But on a bad day that acceptance thing is near nil.
Let’s face it, we have no control whatsoever over the medical side of things, that’s all up to the dr’s and once I came to accept that fact, I could move forward a little. The only thing we really have any control over is ourselves. Initially, every twinge, every pain and I was like ‘PANIC’, but over time I’ve learnt what are ‘Normal’ symptoms and what are more concerning symptoms. You too will learn your signs. I think there’s an old saying to very much suits this situation:
"Be aware, but not alarmed"
I now look for a progression of symptoms. ie a headache, that’s normal. But if that progresses to a numbness down one side and then nausea, then I need to act. But if you EVER get what is known as an ‘icepick headache’ a sudden bolt of excruciating pain, Don’t mess around, ACT NOW!!!
Any medication/supplement/drug must be discussed with your medical team as any concoction could potentially interact with any other medication/supplement/drug you are presently taking. This really NEEDS to be discussed with people who have professional training eg A doctor or a pharmacist. I too was put on that ‘medication roundabout’, being dosed up on all sorts of meds. I was UP, I was down, I was in a stupor with an awful mind fog. Just a nasty yuck.
Now I do have some personal experience here. I’m presently prescribed a THC/CBD combination.
If you do decide to go down this path I would recommend moderation. Start small and then increase if so desired. I say this because for some people the paranoia often caused by cannabis can be a little overwhelming.
Smoking cannabis, the effect is almost instantaneous. Edibles take some time to pass through our digestive systems, so it takes time to have their full effect. Also the effect from edibles is much different from smoking. Smoking produces what is often referred to as a ‘Head Stone’, where edibles gives a more body relaxant effect or what’s often referred to as a ‘Body stone’. The active ingredients (or cannabinoids) in cannabis can vary a lot. Two of the most common are THC and CBD. THC is what gives the psychoactive or intoxicating effect. Where CBD is often considered to have neuroprotective qualities but very little psychoactive properties.
There are many other cannabinoids within cannabis and the interaction between these varying substances can vary the effect considerably and this is often referred to as the ‘entourage effect’. So, finding what may best benefit you can be a bit of trial and error.
BUT (and I cannot say this LOUD ENOUGH…)
THIS MUST BE DISCUSSED WITH YOUR TREATING DOCTOR PRIOR TO USE
*All drugs can have side effects.
*Some drugs can interact with each other.
*Mixing of medications (or supplements or drugs) can be EXTREMELY DANGEROUS(Life threatening)
We are unaware of any medications you are presently taking, we are unaware of any underlaying conditions you may have and we are not medical professionals and for this reason we say
" THIS MUST BE DISCUSSED WITH YOUR TREATING DOCTOR PRIOR TO USE "
Vitamins can be of some assistance for some people but usually a good balanced diet provides the required vitamins. In some cases increases in certain vitamins can in fact have a determinantal effect on overall health and this is why a ‘Balanced diet’ is more often recommended.
Hope it helps
Merl from the Modsupport Team
Welcome lany_m!
I wholeheartedly agree with Merl, before you venture out in self medicating, check with your doctor. If CBD oil is right for you, they may be able to prescribe you the appropriate dosage. Look at the side effects of the antidepressant you are on, some can cause insomnia. If this is the case, talk to your prescriber for a different type.
Some things I would add, try chamomile tea before you go to bed since you can’t take melatonin. Put yourself in a good place by thinking positive thoughts prior to trying to fall asleep. Get into a routine. I had to learn to do this after rupture and it’s not as easy as it sounds but it can be done. Wake up at the same time every day, have a list of chores you want to accomplish for the day, try not to nap. If you need to nap, set an alarm so it’s only for an hour or so. Your body needs to regulate and naps can interfere as you have learned. You need to give this an honest effort for 4-6 weeks, yes weeks, not days. Learn some relaxation breathing and practice it all the time, it can also help you clear your mind as you focus solely on the breathing which can help you not only with anxiety but it’s a good way to end the day. Don’t watch movies or shows with violence in them, stay at the “G” or “Everyone” rating. For a lot of folks I know that have depression, their therapists recommended to also stay away from the news. News stations rarely put a feel good story in anymore. Limit the folks in your life that bring chaos or stress to your doorstep. When I worked, I had to limit some family members due to their need to be in a chaotic state all the time. My response to them was that I deal with this stuff everyday, I’m not dealing with it on my days off. Since I ruptured, it became even more limited, with some not being allowed to talk to me unless it was in a positive state. Some friends and family just didn’t have the ability, so the relationships have been lost. However, I am better without their angst.
It always amazes me when doctors prescribe anti depressants and not a therapist to go along with it. PCPs do it all the time here in the States. I strongly urge you to find a good therapist that can teach you skills. Finding a good therapist may not be easy. I liken it to a good pair of shoes, you’re not going after the best looking high heel or boot, your going after the best support. A good place to start is a Cognitive Behavioral Therapist. Look for a therapist that specializes in stroke or head injuries, they will have a different perspective and hopefully training.
Exercise. Even if it’s a walkabout around your street or in your yard. Weather isn’t much of an excuse, no matter where you reside. There are hours of videos on YouTube that can assist in getting you going no matter your age or ability. Try to exercise earlier rather than later.
Decrease caffeine usage, especially during the later part of the day. While I used to drink a cup of coffee or regular tea right before I slept, I cannot do that anymore. Our rule now is no caffeine after 2:00 pm, but usually it’s by noon or earlier. Being a hot tea drinker, I just switch to herbal teas with no stimulants.
Hope some of this helps. I know our members have a bunch of things they do, so either do a search on this site or wait until some respond.
All the best,
Moltroub
Thank you all very much. Unfortunately there is no talking to my family doctor before wanting to try anything. He is a one track mind and doesn’t even give me pain killers for my pain. Which is ok I would rather not be addicted on them. If I even mention thc or cbd he gets angry and says there is no medical proof these help. Even though it’s been proven that cancer patients etc have used. He even hugged me once and said I will pray for you. It’s legal in my province. I live in bc Canada. It’s my councelling who mentioned I should look into trying it for my pain and sleep. So I’m researching and no will not try until July. July is my next mri then I will be able to see head doctor. I cannot see him or call until after the mri. I’ve tried. I do exercise daily I do go to bed same time and get up same time. I drink herbal tea I listen to soft meditation. I still find myself looking at clock at 1-2-3 am. I go to bed at 10 every night. I take antidepressants that I’ve taken for many years at bed. If I take a higher dose which they tried I have severe nightmares which don’t go away after time. Medication is hard for me. They are still trying to find blood pressure meds that I’m not allergic too. On the 6th one now. Which was just taken off due to severe muscle aches. Every doctor is different some believe some don’t. I no before my rupture my head doctor has told me it was ok to smoke a joint at bed. When I first was diagnosed with aneurysms I stated I smoked before bed to sleep and pain. But that was then this is now. I’ve had a rupture so until I see him in July I will be waiting. I just wanted to no other peoples stories if they have tried them or not. I will also not smoke it. As I don’t want to smoke anything. Even though he told me my rupture was from stress. I also have two that are not coiled so I have fear of a bleed again. I plan on seeking a psychologist on top of my councillor thinking that may help. I agree with every life threatening disease one should be subscribed. Medical is not cheap. Councelling is not cheap. Being on disability makes it hard to afford. The more information I can find on this sickness the better. I find it’s scary doing anything now. Three years ago when they told me to live my life less sports that’s what I did but I had a bleed. So how can they say same now. I walk where I live but when I get to over worked I get scared. Any stimulation on my brain I get worried but yet I’m suppose to live my life. Easy for doctors to say that. Learning to get over the fear will be the biggest thing for me. Somehow in time I hope this happens.
I’m a bit ignorant of Canada’s health care system, but I thought it was universal and there was no out of pocket expense to see a doctor. Apparently I am mistaken.
As for a psychologist and a counselor, they do the same thing. Perhaps looking for a psychiatrist would be a better fit. Please discuss this with your counselor.
I hope our other Canadian members can help you.
All the best!
Moltroub
It’s free to see a doctor well we pay medical premiums monthly. But not a councillor or psychologist they run very expensive. Apologize if my wording goes wrong. I’m still having some troubles. My family doctor referred me to mental health which allows me three visits with their councelling after that I’m on my own. To see a Psychologist runs around 200 an hour. Something out of my reach. So when I’m done with mental health basically on my own. There is one other place where I live called Ann Davis Society but there is 7 month waiting list.
Thanks for enlightening me! There are always pros and cons to health care systems no matter where we live. Our PCPs can limit the number of government assisted health care patients. They do this in order to pay off their student loans and to make a living comparable to their education. Hospitals don’t have a limit and their rules are a bit different. I did a search and found this for the BC area Getting Help for Mental Illnesses | Here to Help
Seems from what you shared, that you need to get on a list immediately, seven months can be a long time when you’re in need of help. From what I understand from the link, it looks like your counselor can refer you to another professional, but of this I am unsure.
I do know that living in rural areas can make it more difficult to access healthcare, no matter where we live. It’s always a give and take situation it seems. I wish for you the best.
Sincerely,
Moltroub
Lany_m from BC, welcome here! We’re glad that you found us, and I think you can see that we’re a talkative bunch. LOL
I am Seenie from ON, so I have a Canadian perspective on things. Merl (and your counsellor) are right about thinking “outside the medication box” for relief. At the same time, we caution everyone, every.single.time about checking with your medical team on anything and everything you take, including supplements and legal substances. Protect yourself from making a bad situation even worse. (Or even just protect yourself from worrying about it, which also makes everything worse.) Your point about seeing your surgeon in July is a good one: be sure to ask them, as they are likely to be the most knowledgeable.
One person you can ask for medication and interaction advice is someone frequently overlooked: your pharmacist. They are an invaluable resource, and you can make a consultation appointments with them. My pharmacist has saved my hide more than once, not to mention saving my money!
There’s no question that what you’re dealing with is damned difficult. But we’re here to listen, help and give suggestions where we can. Don’t forget, though, that you too are one of the group, and you can help others as well! Just a kind word, or showing that you “get it” means the world to others. So reach out to someone else, and do what you can! Every little bit of caring helps.
All the best to you!
Seenie from ModSupport
I’m late to your request for advice, but have you tried ASMR videos for relaxation and sleep? I had trouble falling asleep and out of curiosity found ASMR on YouTube. ASMR is meant to be listened to with headphones or ear buds lying down in a quiet place (bed). Common ASMR triggers include whispering, tapping, brush sounds and scratching but really is individual. What is relaxing for me may not work for you.
There are 1,000’s of videos, so give it a try. You might find something that helps. I recommend Lottie Loves ASMR Glove sounds and Gibi’s Tactile Textured Tingles.