Serious illness and unrelenting physical pain

[Jolene40]

Hi All,

I posted once before but things have sadly progressed significantly with my health. I have numerous health problems one of which is neurological but despite begging and chasing doctors never have got exact answers or much help. I am now at a point where my bowels are packing in. I had to have a stoma which is now causing me severe agonising pain everytime anything passes through or if I move. My brain isn't getting enough oxygen and I'm dizzy out of it unable to walk properly and my spine is collapsing. There's some sort of swelling round the brain as pressure is ungodly. I have been in and out of hospital where it's diabolical as they will only deal with the tummy and can't cope if I say all these other problems are significantly worse. They just discharge me.
Basically the level of pain is getting to a point where I'm screaming regularly trying to hide it and crawling round like a loony.
I am not depressed and don't actually want to die but I am desperate to end this. Because this has taken me down so fast I honestly don't have time to go planning. I am scared to death of fucking it up. Surviving is not an option.
I am too sick to do much of anything and am in severe panic that I won't be able to get it planned in time before I'm left a screaming incapacitated vegetable under the care of the diabolical nhs.

I want the least traumatic option available for me and my poor son living the legacy of this. I would prefer overdose as I just can't take any more physical pain.

Does anyone know which over dose methods are the most painless. I just want to sleep and not wake up when I have to. I have oramorph. I don't know if I will have time to stockpile enough as I'm taking regularly. I have tramadol. Not loads. I know paracetamol is a shitter way to go.
I want to sleep rather than feel the terror and agony of dying. I've read about oramorph but it does not seem to be enough. I want to know I will just fall asleep. Am I dreaming to think such a painless death is possible this way?

I cannot get to the point where I'm pacing around screaming like a lunatic which is happening more often now and need to know I can act quickly.

Apologies for the long post. I'm so desperate and furious that things got to this. Because doctors have denied I had anything for so long and still do bugger all about it i have no support at all with how this will go and how painful it will continue to be. My neurologist even discharged me. I wish I had cancer and then I'd have support with palliative care.

Just for info I have Ehlers Danlos syndrome, ankylosing spondylitis, sjogrens ( neurological type), autonomic neuropathy, small fibre neuropathy, severe colitis resulting in colon removal now something else is seriously affecting my blood vessels and oxygen up to my brain. Spent years being told it was anxiety. I will be forced to end it and they will say aw she was just depressed.
Apologies for the rant. I just needed to get this out there somewhere as I'm desperate and so alone trying to understand what is happening.

 

[JAG_78]

Wow you are having to deal with so much!. Very sorry to read this.
You have a number of autoimmune conditions. I remember reading about at least one autoimmune disease that effected blood cells. Have you tried getting a referral to an immunologist to investigate the blood and oxygen to the brain?.
Our public health service would be far better if it took a whole body (holistic approach) to illness rather than fire fighting symptoms and individual conditions only.
There is an advocacy service called Health Watch which I understand operates in all boroughs of London and all counties of UK (e.g. Health Watch Newham or Health Watch Yorkshire). The branch I had dealings with seemed to have real clout and was prepared to advocate to the hilt for person in their area in an appalling, hopeless seeming state. I def recommend internet searching Health Watch for your county or borough & making contact to find out what they can do for you.
Re painless overdose deaths see the Nembutal and Sodium Nitrite threads. Those are your best bets.
Wishing you luck with getting proper help one way or another.

 

[Arak]

@Jolene40 ,

Obviously I would suggest getting better doctors if that were an option ... doctors often have trouble with people suffering form multiple problems at the same time, and you can get reaction of dismissing you to maintain their 'authority'. Or so they think. Sometimes it helps to 'start over' with doctors and to have someone accompany you to medical visits ...

But that aside, I don't really have a quick and right answer. There are many options. See the books in the resources section, the method megathreads and the rest.

It's an individual choice. I mean, sodium azide will work at a high dose if taken correctly and it will likely kill you in a few hours. But it is absolutely gruesome.
Nembutal/pentobarbital is much more humane (see thread 'getting N from A'). It should work if you don't have a massive tolerance/dependence on sedatives.
We don't know much about sodium nitrite as a method. It's not the worst way to go, but it will leave a grisly looking corpse.
Some people consider hanging humane.

Inert gas (argon/helium/nitrogen) plus exit bag can be good it you can do it.

Lots of other methods.

Overdosing on opiates alone is usually not an option. Even a small tolerance to opiates can radically increase the required lethal dose. Combining CNS depressants is a better option.

 

[JAG_78]

@Jolene40 ,

Obviously I would suggest getting better doctors if that were an option ... doctors often have trouble with people suffering form multiple problems at the same time, and you can get reaction of dismissing you to maintain their 'authority'. Or so they think. Sometimes it helps to 'start over' with doctors and to have someone accompany you to medical visits ...

But that aside, I don't really have a quick and right answer. There are many options. See the books in the resources section, the method megathreads and the rest.

It's an individual choice. I mean, sodium azide will work at a high dose if taken correctly and it will likely kill you in a few hours. But it is absolutely gruesome.
Nembutal/pentobarbital is much more humane (see thread 'getting N from A'). It should work if you don't have a massive tolerance/dependence on sedatives.
We don't know much about sodium nitrite as a method. It's not the worst way to go, but it will leave a grisly looking corpse.
Some people consider hanging humane.

Inert gas (argon/helium/nitrogen) plus exit bag can be good it you can do it.

Lots of other methods.

Overdosing on opiates alone is usually not an option. Even a small tolerance to opiates can radically increase the required lethal dose. Combining CNS depressants is a better option.

From what I've read so far it's tolerance of barbiturates rather than sedatives that would make the difference with N.

 

[Jolene40]

Thank you for your post Jag. I'm going to contact them because although I feel I'm so seriously sick now it's beyond hope really I am so sad and angry that all the info isn't there in one place and things have been missed and dismissed. I want my son to know how very sick I was. I know he can see it now but i want the truth to be known. For example sjogrens can cause horrific neurological damage and numerous papers show this. Not one doctor here knows anything. They say oh it just causes dry mouth. Same with eds which is genetic and the trigger for all my immune diseases. I honestly have spent all my life savings seeing multiple doctors. But part of the problem is in fact that I am so very sick with so many probs. One thing for one causes problems with the other. It really has become so very dire now.
I suspect I have bechets or possibly vascular type eds and that's affecting my vessels. I basically can't do anything but sit in a weird position holding my head up in my hands. Eat occasionally. I am so so sick now it's just on another level. I can hardly wash myself. I have gone downhill dramatically. My body doesn't hold itself together properly at all. When you know you just know if that makes sense. I spent years chasing these arseholes and years were wasted being told it was anxiety. I'm a 39 year old woman so the perfect target for arrogant doctors to use the anxiety card.
Ok Thank you so much for the hope you have given me with your answer ref options.
Am I allowed to ask whether any of you know that users have gone that route and it has been painless and successful? N by way of A is what I'm referring to.
I appreciate they aren't coming back to say wow that was painless thanks guys.
I'm worried of more intolerable pain and we just don't know what we are getting off the internet.

 

[Jolene40]

From what I've read so far it's tolerance of barbiturates rather than sedatives that would make the difference with N.

Ok Thank you. I'm a rather regular user of tramadol and now oramorph.
I take diazepam occasionally.

 

[Jolene40]

@Jolene40 ,

Obviously I would suggest getting better doctors if that were an option ... doctors often have trouble with people suffering form multiple problems at the same time,

But that aside, I don't really have a quick and right answer. There are many options. See the books in the resources section, the method megathreads and the rest.

It's an individual choice. I mean, sodium azide will work at a high dose if taken correctly and it will likely kill you in a few hours. But it is absolutely gruesome.
Nembutal/pentobarbital is much more humane (see thread 'getting N from A'). It should work if you don't have a massive tolerance/dependence on sedatives.
We don't know much about sodium nitrite as a method. It's not the worst way to go, but it will leave a grisly looking corpse.
Some people consider hanging humane.

Inert gas (argon/helium/nitrogen) plus exit bag can be good it you can do it.

Lots of other methods.

Overdosing on opiates alone is usually not an option. Even a small tolerance to opiates can radically increase the required lethal dose. Combining CNS depressants is a better option.

 

[Jolene40]

Thanks Arak. I have tried so hard. I don't give up easy and have chased every doctor imaginable but it has just become too unwieldy now. Only one doctor suggested something for the Neuro disease but within months on it I was hospitalised with severe colitis and had colon removed. It has now just progressed so much I don't feel anyone could help me unless I had millions to demand urgent multiagency treatment. I've seen inside the nhs now and for people like me you are stuffed. I can't stay out hospital long enough to follow up the other stuff. Then you get left there for days on end starving to death because they forgot.
Anyway thank you so much for your advice. I will go read up on the options you have given and read those threads!

 

[JAG_78]

Ok Thank you. I'm a rather regular user of tramadol and now oramorph.
I take diazepam occasionally.

Your welcome. If any of those are barbiturates then it's reason to think twice about N (Nembutal) method.

 

[Jolene40]

Your welcome. If any of those are barbiturates then it's reason to think twice about N (Nembutal) method.

Thanks Jag. I just had to look up barbiturates to check I'm not and havernt taken any. Just diazepam which I understand is a cns depressant although not a barbiturate.

 

[Thewhowithin69]

Aww Jolene,
I am so very sorry for your pain and your dismissal by medical professionals!! Your post brought up so much frustration and anger for me because it's just wrong to not help suffering even if it IS a puzzle and complex!! Medicine (allopathic) is sadly very behind when it comes to chronic issues and are all about bandaiding symtpoms instead of looking for root cause....but you know all this as do I!! I had to access alternatives health and integrative medicine, which uses a combo of Oriental and homeopathy. I used to be a nurse and my father was a doctor and all my sister's RN's so I was raised (in us) to believe the only answers anyone needs can be found in medicine and all other options are frauds. Well aureyvadic medicine has been in India for much longer then modern medicine and it seems those practices that have been around forever have something to offer...anyways it took a mindshift for me to be open to anything. Pain does that though....I also got results changing my lifestyle and diet especially. I am not saying g those things cure anything as serious as what you have going on but I also have autoimmune disorders and they started to show improvement when I dealt with healing my gut first. I know your hurting so bad you cannot think straight so trying to research ways of self healing is probably beyond you but during lulls when you can think a bit look into alternatives (I got all my info sorting thru online info. Not easy but there is help when you sort thru the garbage!)
My best friend has ehlers and one of her children suffer horribly from it as well....but she also had many food allergies she didn't know about, as did I. You don't always have gut problems with food issues, they can manifest in crazy ways!! My nerve pain from a spinal tumor, that pain actually got better when I corrected my vitamin deficiencies!! Thiamin (a b vitamin) was non existent in my blood!! And vitaminD acfuactureally helped my mood!! I just never thought basic or foundational things could really help....
I also learned that my body wants so badly to self heal but needs the best tools to do that. That means you drink good clean filtered water, eat plant based organic foods and clean meats. For starters I had to think of food as simply the fuel for my body. That I could make it taste good came in time but first hurdle was simply giving my body the fuel it needed.
My tumor is now gone. Because it was there for 4 years there is nerve damage that I'm unclear if is reversible. I also have mental health issues and still struggle to help myself with the emotional garbage of trauma on the body. But all that to share that even though I couldn't find a soul to help me figure out the puzzle of my health I did have the ability to turn it around myself. I know how hard it may be to accept doctors are not as special as we make then out to be. They are educated and some of that education is from the dark ages and they come at ill health to fix the symptoms but when they can't figure out cause they throw in the towel (most).
I also decided that even though my first choice was overdose with N I began exploring other deaths to see if there were any that weren't painfilled. I realized the ones I had stayed away from where possibilities for better death, I have a soft belt now for hanging. On good days I'm trying to set up an area for carbon dioxide (barbeque charcoals) or some other enert gas...I think with my history of so many meds over the years I cannot go with typical drugs. I also have a lethal dose of heroin but plan on using that before hanging as my plan B. For myself I still want a doctor to be in play with my death since they couldn't help ease my suffering, but that's my deal!
I just mean you might want to consider, when you can that a good death may not look how you imagined it. I always wanted to fall asleep too but I became open to other options when I began deteriorating...
Because you really prefer to find answers for your health issues and don't really want to have to suicide then I encourage you to look at those out of the box options you didn't consider at first. I know how overwhelming it is to be the only one advocating for your health in a system that isn't set up to really help you find the root problem.
Have you tried kratom for pain?? It is a plant that does help without nasty side effects....it's not as strong but much healthier then RX meds....if you want more info I'd be glad to help you with some optional pain relief because if you can somehow get on top of your pain you maybe able to then sort thru all the other issues you have going on....
Dirty genes by dr ben lynch was also a book that was helpful (had checklists of symptoms to find out which gene is causing the problems and the natural ways to heal)
Also the autoimmune fix (I'll get the title if your interested.) Helped with the way to approach autoimmine issues by dealing with it first. Because you are struggling so fiercely you may need a guide of what to attack and fix first, that was also my problem because I was desperate to stop my pain and that was down the road for me a bit ;(
Sorry so long, just want you to know you aren't alone in feeling like your only option is death. My child was alsoy motivation for exhausting every single possibility before I wait fighting. But I'm not saying you should do anything but what you want to. Please let me know if there is anything I can help you with....
I've pulled away a bit from SS because I want to be dead so bad that it becomes obsessive for me...and because I need my energy to fight my pain....
Hard to be in that in between place where this world has me tied down a bit but the next is shouting at me to join....
You have been so strong in the face of horror and I'm sending you whatever healing vibes and energy I can to help comfort you.
Hugs if you want them

 

[JoshuaCohen135]

Have you tried IVIG for your small fiber neuropathy?

I have the same thing as you do. My GI stuff is different but I have been pure physical hell as well..along with dismissive doctors blaming it on conversion disorder. Psychosomatic, anxiety, etc.

My IVIG backfired in my case as they gave me too much, and I had asceptic meningitis from it. Nie I have nonstop vertigo except ativan.

It's pure hell for me and I don't even have the right diagnoisis for rehab, but if you do it right IVIG will STOP autoimmune issues.

Hi All,

I posted once before but things have sadly progressed significantly with my health. I have numerous health problems one of which is neurological but despite begging and chasing doctors never have got exact answers or much help. I am now at a point where my bowels are packing in. I had to have a stoma which is now causing me severe agonising pain everytime anything passes through or if I move. My brain isn't getting enough oxygen and I'm dizzy out of it unable to walk properly and my spine is collapsing. There's some sort of swelling round the brain as pressure is ungodly. I have been in and out of hospital where it's diabolical as they will only deal with the tummy and can't cope if I say all these other problems are significantly worse. They just discharge me.
Basically the level of pain is getting to a point where I'm screaming regularly trying to hide it and crawling round like a loony.
I am not depressed and don't actually want to die but I am desperate to end this. Because this has taken me down so fast I honestly don't have time to go planning. I am scared to death of fucking it up. Surviving is not an option.
I am too sick to do much of anything and am in severe panic that I won't be able to get it planned in time before I'm left a screaming incapacitated vegetable under the care of the diabolical nhs.

I want the least traumatic option available for me and my poor son living the legacy of this. I would prefer overdose as I just can't take any more physical pain.

Does anyone know which over dose methods are the most painless. I just want to sleep and not wake up when I have to. I have oramorph. I don't know if I will have time to stockpile enough as I'm taking regularly. I have tramadol. Not loads. I know paracetamol is a shitter way to go.
I want to sleep rather than feel the terror and agony of dying. I've read about oramorph but it does not seem to be enough. I want to know I will just fall asleep. Am I dreaming to think such a painless death is possible this way?

I cannot get to the point where I'm pacing around screaming like a lunatic which is happening more often now and need to know I can act quickly.

Apologies for the long post. I'm so desperate and furious that things got to this. Because doctors have denied I had anything for so long and still do bugger all about it i have no support at all with how this will go and how painful it will continue to be. My neurologist even discharged me. I wish I had cancer and then I'd have support with palliative care.

Just for info I have Ehlers Danlos syndrome, ankylosing spondylitis, sjogrens ( neurological type), autonomic neuropathy, small fibre neuropathy, severe colitis resulting in colon removal now something else is seriously affecting my blood vessels and oxygen up to my brain. Spent years being told it was anxiety. I will be forced to end it and they will say aw she was just depressed.
Apologies for the rant. I just needed to get this out there somewhere as I'm desperate and so alone trying to understand what is happening.

I'd hate to be the one to ask, but before you decide offing yourself have you seen an "autonomic small fiber neuropathy" doctor and tried IVIG?

If you have confirmed neuropathy it's awful and screws up your entire body system. I've seen Dr. Oaklander's vids on youtube and have had an autonomic doctor give me IVIG.

In my case, however, they completley screwed up. Gave me too much 9VIG and had menegitis with no steroids or post inflammation treatment. Now I am left with severe blnausea and vertigo. Doctors mosdiagnoised me when it's brain injury of sorts, so I get no care.

Doctors have also blamed my neuropathy on anxiety or nonsense and called me delusional when it's a real thing.

I take benzo now to calm the vertigo but it's 24/7 now and I am losing balance with.lighheadedness on top of my neuropathy hell.

My GI symptoms are different but I know exactly what you going through with stupid doctors and dismissive medical system.

 

[Jolene40]

Have you tried IVIG for your small fiber neuropathy?

I have the same thing as you do. My GI stuff is different but I have been pure physical hell as well..along with dismissive doctors blaming it on conversion disorder. Psychosomatic, anxiety, etc.

My IVIG backfired in my case as they gave me too much, and I had asceptic meningitis from it. Nie I have nonstop vertigo except ativan.

It's pure hell for me and I don't even have the right diagnoisis for rehab,

I take benzo now to calm the vertigo but it's 24/7 now and I am losing balance with.lighheadedness on top of my neuropathy hell.

My GI symptoms are different but I know exactly what you going through with stupid doctors and dismissive medical system.

Ah Joshua. I know your pain. I have horrific head and cognitive symptoms. Vertigo dizziness pressure agonising cranial neuropathies all of it.
I did get a try of ivig a long time ago on private insurance. Had 2 attempts and this was before things were so bad. There was no immediate benefit but I didn't think it worked like that. I'm in the U.K. under the nhs. Yes we are very lucky to have it but it's absolutely diabolical in terms of any care for chronic issues. I had to diagnose myself first then get answers after by chasing all sorts of consultants to prove what I had. It really is hopeless and I don't say that lightly at all. My cognition feels so badly affected I'm living in a bubble. I know you must have some understanding of that.
The more problems arise the easier it is for doctors to just wash their hands of you.

 

[Jolene40]

Thewhowithin - Thank you for your lovely message. I have little words to convey how sick I feel. I can hardly lift my head. I can hardly wash myself right now. I am in a very bad way. I have no strength anymore for anything and will be in hospital again imminently. I've been in and out non stop with severe bowel problems and nothing but trouble with my stoma. I come out loads worse than ever. I'm degenerating from all these illnesses I have and know it is not long at all until I'm at full vegetable status. I am quite pragmatic and don't back down easy. I have fought for years for help and it has been disgraceful
It is only as I'm now so bad I need a quick exit option.
I'm furious as I don't want this at all
But I honestly don't want to keep living this way. I'm no fan of the med profession but I have tried extensive holistic options and don't really buy into that. I

 

[Jolene40]

Sorry submitted before finished. I wanted to add that I do believe it to be helpful for many who aren't quite as bad as I now am. I do appreciate the kindness of your message xx

 

[Jolene40]

Ah Joshua. I know your pain. I have horrific head and cognitive symptoms. Vertigo dizziness pressure agonising cranial neuropathies all of it.
I did get a try of ivig a long time ago on private insurance. Had 2 attempts and this was before things were so bad. There was no immediate benefit but I didn't think it worked like that. I'm in the U.K. under the nhs. Yes we are very lucky to have it but it's absolutely diabolical in terms of any care for chronic issues. I had to diagnose myself first then get answers after by chasing all sorts of consultants to prove what I had. It really is hopeless and I don't say that lightly at all. My cognition feels so badly affected I'm living in a bubble. I know you must have some understanding of that.
The more problems arise the easier it is for doctors to just wash their hands of you.

I forgot the actual point I was making which was the nhs will not give you ivig. You only get it for set conditions. Even though I'm so unwell it means nothing. I know people who can't move. Ivig helped them but nhs then withdrew it. It is unbelievable but true. I luckily had private insurance but they would only cover 2 attempts of it

 

[JAG_78]

Thanks Jag. I just had to look up barbiturates to check I'm not and havernt taken any. Just diazepam which I understand is a cns depressant although not a barbiturate.

Your welcome. So N would work for you then. Unfortunately it is expensive + from what I've read on this site there seems to be only one dependable non-scam source which is 'A' who is mentioned in the peaceful pill handbook (see PPH ebook in resources).

 

[Jolene40]

Your welcome. So N would work for you then. Unfortunately it is expensive + from what I've read on this site there seems to be only one dependable non-scam source which is 'A' who is mentioned in the peaceful pill handbook (see PPH ebook in resources).

Thank You. ❤

 

[JAG_78]

Thank You. ❤

Best wishes to you. I hope that you get what your looking (freedom from pain and debilitating illness) one way or the other. Good luck

 

[Thewhowithin69]

Sorry submitted before finished. I wanted to add that I do believe it to be helpful for many who aren't quite as bad as I now am. I do appreciate the kindness of your message xx

Yes, I see now that maybe my idealism got the best of me. I saw some improvements with some efforts I made too but bottom line my condition is also deteriorating and I can hear my own time ticking by fast!! Iguess that's why I also said maybe be open to whatever way is easiest for you at this point. I DO understand wanting painless and if meds are your way then N seems like the best...I just know I also evolved in how I envisioned my own death and thought it might help to know you might also change your desires??
I know sometimes the mess our bodies are is simply too overwelming to correct and I heard your frustration....I'm angry too because I actually don't want to die this way and medicine has had no answers or wrong answers my whole life. So I'm very sad about spending so much time begging for help that they don't have. I also didn't give alternatives much hope but I do know they can help some too so hard to find the balance so I'm sorry I wasn't trying to say hey go sing and do acupuncture and your pain may be tolerable. I want to believe our bodies do want to heal but I accept that many times the answers we want just aren't out there too.
I really do feel for you because I fully know I'm in a similar place. I may have more time then you but I continue to deteriorate no matter what I do and the nuerolodical and cognitive stuff is the worst. I'm truly afraid I will get too sick to do it, which is why I have a few methods on hand (or gathering) and hope like hell I choose the best timing.
My life ends by my hand and my choice, no question. I just wanted more time for my daughter to come to terms with my death. It's hard when we are dismissed because it feels like then our loved ones are left with the stigma of we must be "just crazy".....I want to be able to say goodbye if I can't be with my loved ones like you can with palliative care!!
So I hope you can figure out which way and when/how seems best for your situation. If I could actually help you I would because I do believe that when you are done it's ok to be done!!
Again sorry if I came across pushy or too prolife. I believe no matter why we are here we deserve the dignity of acceptance and no judgment. I guess I want to support you and I thought you were still wanting to fight?? I'm so sorry that your body has betrayed you!! I know how sad I am about mine....
May you find peace and comfort thru your journey and know you aren't alone while figuring it all out!

 

[Jolene40]

Yes, I see now that maybe my idealism got the best of me. I saw some improvements with some efforts I made too but bottom line my condition is also deteriorating and I can hear my own time ticking by fast!! Iguess that's why I also said maybe be open to whatever way is easiest for you at this point. I DO understand wanting painless and if meds are your way then N seems like the best...I just know I also evolved in how I envisioned my own death and thought it might help to know you might also change your desires??
I know sometimes the mess our bodies are is simply too overwelming to correct and I heard your frustration....I'm angry too because I actually don't want to die this way and medicine has had no answers or wrong answers my whole life. So I'm very sad about spending so much time begging for help that they don't have. I also didn't give alternatives much hope but I do know they can help some too so hard to find the balance so I'm sorry I wasn't trying to say hey go sing and do acupuncture and your pain may be tolerable. I want to believe our bodies do want to heal but I accept that many times the answers we want just aren't out there too.
I really do feel for you because I fully know I'm in a similar place. I may have more time then you but I continue to deteriorate no matter what I do and the nuerolodical and cognitive stuff is the worst. I'm truly afraid I will get too sick to do it, which is why I have a few methods on hand (or gathering) and hope like hell I choose the best timing.
My life ends by my hand and my choice, no question. I just wanted more time for my daughter to come to terms with my death. It's hard when we are dismissed because it feels like then our loved ones are left with the stigma of we must be "just crazy".....I want to be able to say goodbye if I can't be with my loved ones like you can with palliative care!!
So I hope you can figure out which way and when/how seems best for your situation. If I could actually help you I would because I do believe that when you are done it's ok to be done!!
Again sorry if I came across pushy or too prolife. I believe no matter why we are here we deserve the dignity of acceptance and no judgment. I guess I want to support you and I thought you were still wanting to fight?? I'm so sorry that your body has betrayed you!! I know how sad I am about mine....
May you find peace and comfort thru your journey and know you aren't alone while figuring it all out!

 

[Jolene40]

I'm not angry with you lovely. It's my situation and being left to fester to the point you've no choice but to top yourself.
Will speak with you via message. What you've said is so similar to my situation and feelings it's uncanny.

 

[NoDream]

oxygen up to my brain.

Since you have Ehlers-Danlos you surly have POTS too.

http://www.potsuk.org

 

[Jolene40]

Since you have Ehlers-Danlos you surly have POTS too.

http://www.potsuk.org

I do. It has gone way beyond this though. It's much more than the pots.
It's refreshing to read people's understanding of all this!
Only on online groups with all my conditions is there any understanding.

 

[Jolene40]

I don't know if it's because I'm using the website on my phone but i can't find the resources section in order to download pph ebook. I've put a search in and it's still not coming up with much. Its not easy to navigate on a phone

 

[JoshuaCohen135]

Ah Joshua. I know your pain. I have horrific head and cognitive symptoms. Vertigo dizziness pressure agonising cranial neuropathies all of it.
I did get a try of ivig a long time ago on private insurance. Had 2 attempts and this was before things were so bad. There was no immediate benefit but I didn't think it worked like that. I'm in the U.K. under the nhs. Yes we are very lucky to have it but it's absolutely diabolical in terms of any care for chronic issues. I had to diagnose myself first then get answers after by chasing all sorts of consultants to prove what I had. It really is hopeless and I don't say that lightly at all. My cognition feels so badly affected I'm living in a bubble. I know you must have some understanding of that.
The more problems arise the easier it is for doctors to just wash their hands of you.

Oh I know the feeling.

Ativan wearing off and I my vision is oscillating as I type this. Balance in my body is off..

I'm not even talking about my other neuropathy symptoms. Just the vertigo alone is bad..thid could have been prevented in ny case but I was not given anti inflammatory.

I don't even want to die but the suffering is what I want to end. Living like this is not life. Neither is it fair.

Went to the ED last week to see if doctors can look at my vertigo. Got thrown out to street with my wheelchair without medication, and told to see my neuro...who was the one to recommend going into the ED.

I'm in perpetual pain as well.

If you've tried IVIG I'd stick with it for 6 months assuming you didn't get cerebellum swelling like I did. It might be our last chance..

The hospitals are the worst. When they don't know what it is they blame the patient. Label it anxiety or other nonsense. Fighting the physical symptoms, and dealing with doctors who don't listen. Dismiss you. Bring ego into the room, or judge you based on miswritten records..

I don't let those assholes define me. You shouldn't either, but the fight is hard. Especially when you're too sick to advocate yourself.

I know you are suffering.. I know it well.

I have had the thoughts of ending it all..when there are no answers. We either live in suffering and fight for treatment or die. Hospitals are a joke, throwing us around as if we're not their problem.

I'm honestly suicidal from the pain as well. I haven't been on this site long but I've done enough research and saw enough videos to know it's going to hurt..but that's the option a lot of us have come faced with.