Does anyone else feel like they are going mad with no end to problems and little or no help.
Madness: Does anyone else feel like... - Hughes Syndrome A...
Madness
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Greenmil3
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28 Replies
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Ten years of trying , no luck . Nothing worked, doing very little to help myself due to not being a doctor
Just read your info and I can see the crap you went are going through
Packer fan!!! Woot woot!
HollyHeskiAdministrator
I think we all emphasise with you and have been made to feel 'mad' with this disease at some point
Every little thing ends up a battle but remember, we all together can win the war xx
APStrong
KellyInTexasAdministrator
Yes, some times.
Sometimes I think my doctors feel the same way.
I think it’s hard for them to keep trying only to have setbacks. ( or no progress.)
I don’t think you are alone in this. ( thank you for your raw and painful honesty.)
It’s wearing. It makes me feel tattered, like I can’t handle another cycle through the machine.
I hope it helps you to hear this. I hope it doesn’t make you feel more hopeless. But I want to answer you as honestly as you asked.
I will tell you that we haven’t got all of the new thinking yet from the 16th International Congress. I have some of it but am still assembling what I can. ( what I’ve been privy to. Small discombobulated twitter or power point presentation snippets.)
Some of it is encouraging. So maybe take heart there.
What are your biggest frustrations? What do they arise from? Symptom wise ? Explain , “ very little help.”
( if you feel it might help you to share.)
My APS is changing my personality and seriously changing my cognitive ability the warfarin and the other plethora of drugs I take is not slowing it fine or making it better. And I am having to be my own patient advocate which I know a lot of us have to do but I am tired of the constant struggles. I also run my own business as a chartered Surveyor so taking steps to make the company less reliant on me being there is daunting as well. It’s just everything piling up and I feel like just having a mental breakdown! There you go how I really feel.
I just sat down and read all your post from when you joined .
Has anyone spoken with you about the possibility of seeing Dr Paul Holmes in London? He is a neurologist who understands cerebral APS quite well and is very interested in trying to halt its progression.
I will try to tell you from a lay person ‘s perspective as I understand it what his interest is:
He usually looks at patients who have symptoms despite a therapeutic INR, so it’s a clue for him APS is not always about proper blood flow- it’s about the immuno modulatory affect of the disease on the brain itself. He performs an FDG dementia protocol PET scan and often finds hypo metabolism of glucose. This tells him there is an immuno modulatory component at play.
He usually prescribes azathioprine or mycofenolate.
That’s is the basic idea with I’m sure a few details not quite right- Dr Holmes obviously as the Specialist would need to explain this .
It’s early days obviously, and I think no earth shattering successes. But it’s the concepts here that are important. And not new. Many doctors in different countries are saying the same thing and have been for some time. We need to catch the source problem upstream of the source, not downstream. ( downstream being just warfarin- a plaster on the problem itself. )
At any rate, I wonder what Dr Paul Holmes might talk with you about? He does see some patients privately.
Probably seems an overwhelming thought. Much ado about nothing perhaps. Maybe, plus added risks of lowering immune system. “Risk vs benefit.” Only a very astute specialist could advise if this would even be an advisable or possibly fruitful path for you, and that’s where the risk vs benefit discussion part comes in.
Paul Homes would be the guy. Neurologist with a focus on cerebral APS.
Kelly
Thanks for that it’s interesting reading.
I’m waiting on an appointment with haematology at Guys and a possible referral to see Paul Holmes dependant on the analysis of the original MRI that my local neurologist did and the recent one at Guys. I am trying to talk to prof DCruz registrar who I saw last time or rather my wife is for me to find out what stage everything is at as she is finding living with me very hard at the moment.
A This is a terribly rough racket.
Each marriage must find its own way. I think ( I’m guessing here) most marriages are affected in some way by this.
I have guilt that my husband has to pull more of the weight. ( we own our own companies also- that compliment one another and are a bit co dependent on one another.) One company is mine, one more his, though management of both hits my office. I have great para support, ( and subcontract a fantastic chartered surveyor quite often- I know your line of work so I appreciate it’s mental and often physical demands.) yet the work load it overwhelming both of us ( mainly me.) at certain times.
I’m having seizures , and now visual hallucinations- but they are ordinary. So I can’t always trust what I perceive. Not great for ,”corporate America.”
It sounds ridiculous, but for us we’ve decided to let a lot of things ,”go” in the evenings and stick to a routine of making dinner together with out teenaged son - and watching Netflix or Hulu series.( just us.) ( so we can do short amounts of time or add one more if we want.) Crashing in bed doing that helps us both just rest.
That should have read “dinner with Our teen aged son”. Yes we do feed him! Lol
🤪
I am so sorry that things are so awful for you! You certainly need support, you can find therapists really easily, if not through your GP also on here as one route. counselling-directory.org.u...
It is important that you have the chance to talk to somebody to take the pressure off yourself and partner. I always feel bad about my partner, when I am ill for long periods of time, I don't think any of us can help feeling like that. I hope your medical appointments with Dr Holmes come as soon as possible. MaryF
There are 2 issues. The first is the medical, which is tough to try and sort out.
The second, is the psychological, which is my area.
Although it may seem if you can fix the medical bit, everything else will be OK.
What is happening to you is enormous - far more than anyone can deal with alone. You have your unstable medical condition. You have a demanding business. You have a family.
It's understandable to feel you are having a mental breakdown! You are probably not having a mental breakdown, but you are saying loud & clear that you are feeling you can't take much more, worried that everything will come crashing down.
I don't know how you feel about going to talk to someone like a therapist. No, they can't make it all go away, or tell you how to run your business. But, they can give you a space to talk & think. This might not seem much, but it is! It is a protected space, just for you - perhaps you have never had someone fully attending just to you. Perhaps you have always been the one to fix everything?
This damn illness doesn't just affect the patient, you, but the entire family - your wife. She has to watch you suffer. This isn't easy & she is also badly affected. No one signs up for a partner with a disease. There's only a limit to how to say what your feelings really are to someone you love. You can tell someone who has no relationship with you in the sense of family or friends. It's a space that is just for you. You don't have to worry about upsetting the people you love - you can allow yourself to tell-it-as-it-is. You not have to be resilient all the time!
I do know that some men feel this is a weakness. Some women too; it's not only not a failure but brave. It takes courage to tell someone what it is like being you. In return, the therapist won't tell you everything will be OK - but you will find resources you don't think you have & don't have to worry about upsetting the therapist, who is tough as old boots! This is what therapists do. We don't tell the patient our woes! You don't have to worry about anything other than allow yourself to feel angry, hurt - enraged about what is happening & how powerless we can feel. And guess what: this is all perfectly "normal". In fact, I would be worried if you didn't doubt your capacity for strength & fortitude & perseverance!
We all need help. Take an hour a week to talk & it will help you, your inner you, but it will also help your relationship, your marriage. Sometimes, we can't say things because we love our partners.
You don't have to agree with me or reply. But, you can contact me if you would like to know how to proceed.
I sincerely hope you see Dr Paul Holmes.
With good wishes,
Ros
What wonderful words of understanding, just doesn't reply to Greemill3 but applies to us all?!
Thank you Ros
Thanks Ros I have looked at the counselling link someone posted but going on that link it describes cbt and other therapies when all I need to do is talk! Any suggestions what I should look for?
I will reply to you later. If you could PM me to say where you are located it would be helpful!
MaryFAdministrator
Yes, I think we all have our moments like that! MaryF
you might profit by viewing a medical docu series which is streaming now on the "Commune" website, hosted by the functional medicine pioneer Dr. Mark Hyman. Each episode is available for 24 hours beginning at 9 AM Eastern standard time (East coast of the US .) Today's episode which,I have not seen yet, is entitled "hacking your healthcare." Dr. Hyman's purpose in creating the series is to empower patients who, like you, have a number of symptoms stretching over various medical specialties. Dr. Hyman speaks of the need of 21st-century medicine to progress beyond the modality what he calls "name it, blame it, then tame it." Rather he believes the 21st-century medicine needs to focus on personalized bio chemical errors or non-identified interrupters such as mold or heavy metals which are compromising bio chemical functions that impact a lot of bodily systems. If you are interested try googling commune Dr. Mark Hyman. if you would like to see the series but you can't find it, private message me and I will send you a link. If you watch this I hope you find it helpful.
Yes all the time xxx
Not just me heading for a crash then?
Keep your chin up mate cx
Every time I do that feels like someone takes an (had a thought of a clever word but can’t remember it!) imaginary swipe at it
I know that feeling but it’s the only option we have
I forget everything and mix my words up all the time xx
It's not just you, Greenmil3, as these responses highlight. I go through periods where aspects of my cognitive function are very impaired. I generally also feel utterly hopeless/low/confused during these periods. Whether the latter is a reaction to the former or the two are both manifestations of APS (or perhaps another of my conditions, such as Lupus), I don't know. It is, as you say, very difficult to get truly informed, specialist help. I have an excellent and very supportive rheumatologist who oversees my care but they are not a 'leading light' in APS and I do sometimes wonder what additional advice or investigations I might be given were I to be seen in Central London. So if you are getting to see Dr Holmes, then I would try to focus on that as far as is possible and hopefully an appt is not too far away - or you might see him privately if you are not referred on the NHS.
I think it is very difficult for partners/spouses at times. I feel guilty about how short tempered I can be at times. What works for me and my husband is sitting down occasionally and just having a good talk about things/how we are both coping/our feelings. I have to initiate this but it does seem to 'clear the air' and have some sort of cathartic effect.
Good wishes to you.
Mrs Mouse thanks so much for that advice it doesn’t help any that my wife has an alcohol problem so we fight very easily.
Oh. You are really needing very specialized help.
I’m so very sorry. I know you must love her so much and grieve her illness also- even though you want to throttle her!
I think it’s safe to say most every family goes through this. Take heart.
( I’m in the throes of it with my sister right now. She’s 20 years my senior and my dearest friend. Very painful.)
I'm really sorry that you are going through all of this. And in addition I can only imagine that running your own company is such an incredible strain at present. You are clearly doing the right thing in putting things in place to make the company less reliant on you, but everything takes time. MaryF suggested seeing a counsellor and, from my own experience, that might help you in the period when matters professional and medical start to work themselves out better. It might also give a fresh perspective/ideas on your relationship with your wife.
One good thing about the local health service where I am is that one can self-refer to 'first stage' counselling. I have done this on three occasions over the past few years and it has helped enormously. Basically I was at the stage where I felt everything was going to 'blow up' - the pressure cooker I was in was about to explode. Just being able to go and let it all out to someone who wasn't going to react negatively or judgementally, etc, was of immense help. We also got to speak about what actions I might take to help relieve the situation further. In practice these were very small things, but they did give a bit of room/ease the situation and I am glad that I went along to speak to someone. It didn't provide a 'magic wand' but it did give me essential room to breathe.
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